Considering having mom with dementia live with us

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filiaecclesia

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Good morning:

My 84 year old mother recently suffered two very severe spinal fractures due to serious osteoporosis. She had been living with her sister, but we brought her to live with us. When it became clear she was not healing as her doctor anticipated, I had her hospitalized for more tests. Her condition is very painful, chronic, and evidently non-healing.

She was sent to a rehab facility to see if physical therapy could work to increase her muscle strength with the goal of fall prevention. There she has been diagnosed with moderate dementia, which seems to be progressing.

I want my mom to be as comfortable and happy as possible. We are of Italian heritage, and my mom grew up with her aged grandmother sick in bed but in their home for sixteen years. This is what we grew up thinking was normal, and what my mom surely expected. I’m not sure she expects anything at the moment, yet I have a lot of guilt about not bringing her home here.

My husband and others advise letting her remain at rehab to see if any improvement can be made. If not, she may have to be transferred to the nursing home unit for “comfort care.”

The reality is that with both the worsening dementia and her extreme physical frailty, I may not be able to have her in our home. In the center of my heart is the question: am I doing enough, or am I shirking my duty to her by not having her live with us now?

I would be very grateful to hear your thoughts and experiences as they relate to this situation. It is the first time I’ve had to deal with anything like this!

In His peace -
 
Dear One,

You are NOT alone in this. Many of us have been faced with these kinds of choices. There is no truly “Right” answer except to do what is best for your mom and to make that decision as a family - in particular you and your spouse.

I personally have dealt with this three times in my life - each more directly than the one before.
First was my aged Grandmother, with CHF who was becoming increasingly frail.
Second was my Dad - diagnosed with Alzheimer’s
Third - my own Dear Wife diagnosed with Alzheimer’s

In each case - in our family - the decision was made to care for our loved one at home. My grandmother was cared for by my parents, my Dad was cared for by my mom, and I care for my wife. BUT - in each case there has been strong family support and tangible, physical as well as emotional assistance provided.
I tell you this so that you recognize that you need to take a lot into consideration. What is right for me may not be right for you.

Anyway - I would suggest a couple of things. First of all, talk to the people at rehab about: a) what all is involved in caring for her both now and as things progress. Evaluate your ability to do these things. b) Also discuss her prognosis - how long she has to live. Also - see if there is a good hospice in your area. The rehab people can probably put you in touch with one. My mom used them for dad, and my DW has just been accepted into Hospice in home care.
Talk to them. See what is available and when your mother might be eligible. It might be sooner than you think. The one I am using provides in home services as well as in patient services. Plus they are there for the whole family and not just for the “patient”.

I can assure you that, should you decide to care for your mother at home, you will find amazing strength and blessings attached. You will also endure many stresses, long days and nights, you will be tired all the time, and come to feel that you are in something of a “holding pattern”, unable to really think about much beyond what you need to do for your loved one. It takes courage.

If you decide that it is better for her to be in a LTC, and this can depend somewhat on her personality as well as your capacities, you will need to be there a lot for you will have to be her “advocate” with the facility. It will be your responsibility to assure that they are doing what is needed and that your mother is as well cared for and as content as she can be.

Regardless of the Choice - there will be guilt, second guessing, even some anger. But know this…Whatever decision you make…make it out of Love and only after careful and prayerful reflection.

And those of us who have been there - or are there now - will keep trying to help.

Peace
James
 
I’m not clear how long she’s been in your home? Are we talking a week or two, or a year or two at this point?

My maternal grandparents moved in with my parents after my grandfather developed Alzheimer’s, and it became too much for my grandma to care for him. However, my grandmother was also developing dementia, and both didn’t want to face her own dementia, or my grandfather’s problems.

My mom is of Italian heritage, so she was definitely open to caring for them as long as possible. However, my paternal grandmother wasn’t. In my mom’s world, it was normal and natural for the elderly to relinquish things to the younger generation-- like giving up driving, or giving up “being the boss”, or giving up whatever. My grandmother, however, had to have her keys taken from her once she proved to be too dangerous and forgetful to drive on the roads; she wanted to run my mom’s house, which really chafed; when my mom tried to keep on top of her medicines and medical care, she rebelled; and of course, with the dementia, she was totally fixated on what she wanted to remember, but would totally forget whatever was inconvenient. My grandfather with Alzheimer’s was very laid-back and peaceful, but my grandmother was so combative, she eventually spent a stint in the psych ward.

It made my mom very unhappy when things got to the point she was unable to care for them in her house anymore, but she was happy for the years they did spend under their roof, and she still visits and contributes to their care at nursing homes. And she calls me every week with frustrated stories about how their caregivers don’t pay attention-- “He hasn’t had a BM in 9 days and they didn’t even notice!” or are sloppy-- “I didn’t realize it until now, but they haven’t changed his socks in 2 weeks. That means they haven’t bathed him in 2 weeks.” or are just clueless-- “So, when he was in the emergency room at the hospital, she pulled him off his pain med Whatever, and would only give him Tylenol. She said she didn’t want to mix two of his meds, but he’s had eight or nine physicians and nurses who have been just fine with it, and she doesn’t have a history with him. And he’s in terrible pain and hallucinating.” Their care centers are some of the better ones-- but there’s no substitute for loving family.

So-- first, make sure you have power of attorney. It will make things so much easier.

Second-- if your Mom’s got a good Italian background going, she might have a higher chance of being able to let things go and assimilate into your life. That’s important, especially as things get worse.

Third-- there’s no substitute for family. You can take her to doctors and rehab and appointments, but when it comes to day-to-day care, there’s still no substitute for family.

Fourth-- You can only keep her in your home for so long. When the time comes when she really needs to go to outside care, you need to realize that’s best for you and best for her. Be honest when you get to the point when you’re over your head. That point may or may not ever come, but it’s important to be aware of.

Good luck!
 
filiaecclesia said:
Good morning:

My 84 year old mother recently suffered two very severe spinal fractures due to serious osteoporosis. She had been living with her sister, but we brought her to live with us. When it became clear she was not healing as her doctor anticipated, I had her hospitalized for more tests. Her condition is very painful, chronic, and evidently non-healing.

She was sent to a rehab facility to see if physical therapy could work to increase her muscle strength with the goal of fall prevention. There she has been diagnosed with moderate dementia, which seems to be progressing.

I want my mom to be as comfortable and happy as possible. We are of Italian heritage, and my mom grew up with her aged grandmother sick in bed but in their home for sixteen years. This is what we grew up thinking was normal, and what my mom surely expected. I’m not sure she expects anything at the moment, yet I have a lot of guilt about not bringing her home here.

My husband and others advise letting her remain at rehab to see if any improvement can be made. If not, she may have to be transferred to the nursing home unit for “comfort care.”

The reality is that with both the worsening dementia and her extreme physical frailty, I may not be able to have her in our home. In the center of my heart is the question: am I doing enough, or am I shirking my duty to her by not having her live with us now?

I would be very grateful to hear your thoughts and experiences as they relate to this situation. It is the first time I’ve had to deal with anything like this!

In His peace -
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Does your Mom need any nursing care? My Grandmother suffered from dementia also, and my aunt wanted to care for her, but she need skilled nursing care that was beyond anyone in the family, even the homecare workers. Finally, one of the doctors told us to that Grandma needed 24/7 care that we could not give her and STRONGLY advised us to put her in a nursing home. It was very difficult, but in the end, we knew that the doctor was right and found a place for her nearby. We all took turns visiting and after a while the dementia was so bad that she forgot all of our names and even who or where she was. The nurses always treated her with kindness and respect, and we even got know the residents. You should call a family meeting for all concerned and discuss what to do next with your Mom, there are legal and financial issues that have to be addressed.
 
No matter what decisions you make I can highly recommend THIS WEBSITE for interacting with others who are involved in these same issues. You will find a lot of support and information among these good folks.
I use to spend a lot of time on the “caregiver’s forum” - not so much these days.

Peace
James
 
I live with my Mom who has probably Alzheimer’s (can’t really tell the diff. between that and dementia without cutting open the brain). I moved in with her as a single Mom with a teen son who did not like her and did not live with her. It was a hard decision to make! It is her own fault her grandchildren are not connected with her. It was my Dad they all love, and Mom - just didn’t connect. I realized now that this, like the Alzheimers, was probably due to the shock treatment they used to give yoiung mothers with post-partum depression (after awful hospital births and being encouraged to put their newbornss on formulas and schedules, depriving mothers of the natural body’s happy oxytocin hormone and infant bonding assistance) and she never was who God made her to be…

At any rate, it was a very tough transition. My Dad had died of Parkinson’s, mind intact, and had pretty much been her mind for her so we did not know how bad she was, and it was suddenlyclear she could not live alone. I sought God to tell me what to do, but He went and gave me the silent treatment on this request! Gee! That has always meant: Use the brain I gave you, the lessons you have learned, your intution, and all the principles you have been taught…

All those things made me realize, at the end of my life, what will I wish I had done? If I had not tried, I would regret it til the end of my days. Furthermore, I had to apply recent things God had taught me: Be not anxious, and to Trust in Him. Fear made me not want to do it, but I needed to put all fears in Gods hands and do what I felt was right, and trust Him to help me through the obstacles.

So I moved ahead, and the transition was horrendous. Our beloved cat, the best cat we ever had, died a sudden but week-prolonged pitiful early death the week before we moved. My son ran away the first day he got here (I had moved our stuff over school break while he was with his Dad so he would not have to be involved), after being dropped off by his Dad and lamenting, “What did I ever do to deserve to live in this horrible place!”. So hard when my whole life was about keeping things best as possible for my son! And my mother picked an argument with him almost as soon as he walked in the door… he was gone less than an hour, but had never done this before. My mom picked arguments with us both all the time, and constantly unplugged my son’s things, and harped about my belongings in the basement (big empty basement, and she yelled at the beleaguered moving men for bringing my stuff in the house) and the first month one day I can home from work and she said she had a truck in that day to get rid of some of the “junk” in the basement (my belongings)… I had to poll neighbors to find out what truck was here, and contact the agency and sort through a giant warehouse to find my stuff I could not even name, not knowing what boxes were taken… but they were helpful folks, and I brought them donuts and cider to thank them…

There’s more! But God sustained me! I got help from the Alzheimers Association, good counsel, and made the appropriate changes. Locked the basement door; I never argue with her, just agree, and have her in adult day care a few days a week, and make separate meals (my son needs diner without crazy grandma) and also realized I was letting a crazy person run my life; I, the sane person, am in charge now, and she accepts that. Its what she needed actually. And her worsening memory makes it actually easier… and my son has adjusted… she is, for example, excellent fodder for Facebook entertainment - he gets a lot of “likes” when he posts some of the things she says or does - last night she offered to “cook” a box of Special K cereal for our dinner; she held it up to show when she made her generous offer (I had dinner in the oven for her; but she feels she should offer to cook anyway). Yes, so Facebook friends enjoy the nutty stories and sayings of his grandma… sounds like a crazy life to them!

So that is what worked for me. Decide what is right, and trust God to help me make “right” happen. Trust through the obstacles. I realize now what a good choice this is. I could not have anticipated that I would work fewer days as substitute teacher, and my income would take a dive, and that would make me “earn” back far more taxes than I paid! Also, even though I do not support her, that she is dependent on me also postively affects my taxes, so says the tax person - and it worked out for me, a single mother. I would not have taken her on for that, but it was a real bonus!

People tell me its “wonderful” what I am doign for my mother, but I am really not a martyr. Its honestly easy now - it was not at first, as you can see - but when my Dad was hospitalized and in a nursing home several months at the end of his life, it was much harder! Becasue when your loved one is elsewhere and hurting, you feel you should be there when you are home. And believe me, you will see them in the institution and know you are needed! And when you are there, you feel you should be home. You are never all wherever you should be! You ALWAYS feel divided! And so much time in the car! * It is MUCH, MUCH easier to have all the people you care about in the same house! *Much! I have tried it both ways. This is much easier. The actuall martyr is the poor person who takes the popular advice and does the nursing home, thing, feels guilty all the time, and never feels she is in the right place or is confident ever she is doing the right thing!

[Continued in next post]
 
You have to do what is right for your mom, medically speaking. You can’t do everything and if you aren’t medically trained, and your mother needs constant supervision/care, that’s not possible in your home.

It’s not easy. It never is and it never will be.

😦
 
[continued from previous post]

Don’t believe the over-inflated prices for home care quoted either. There lots of kind people you can pay much less to do some of the care and give you breaks… Alzheimers Associaln locally offten offers some free respite care. There are options. Also, you do’t know how long you will need to give her intensive care. It could be quite short. Trust God, not scare stories. If things get hard, you can make different choices. But try the way that feels right to your heart, and see how far you get with it.

In the end, think of what you will wish you had done at the end of your life. Honestly, I think home is best, for her AND for you. Thats my opinion, from my experience…

I do not know what the future will bring. Its possible I amy move out of state when my son raduates in a couple of years, if my freinds’ annulment goes through, and we marry – he has already drawn up plans for a downstiars bed and bathroom for my mother, if she needs to come along. 🙂
 
When my grandmother was diagnosed with alzheimers and could no longer live by herself, she was moved in with my mom and her new husband. She lived with them for four years. She was sent to ‘adult day care’ when mom and her hubby were at work during the week. Catholic Charities actually paid for most of it, so that they only paid $30/month. But grandma was pretty self sufficient. She performed all of her care herself: she took a shower by herself, got dressed by herself (but she needed her clothes laid out for her), she fed herself, she toileted herself. But her mind was gone, and she was very quiet most of the time.

When my mom had a stroke in 04, I took on the role as primary caregiver and she’s been with me since. Before she left the rehab facility (Rehabilitation Institute of Chicago, not a nursing home/rehab facility), I was trained to care for her. Thank God she’s still with me. I feel so very blessed that I can care for my mom and that she’s still with me. I could never put her in a nursing home. So I’m so grateful to God that I don’t have to. When I go to work, we have a girl come in and be with her.

She was a maximum assist when she first came home from the hospital, but she can do stand-pivots now, and she can take a few steps with assistance. But she needs help in and out of bed, in and out of wheelchair, on and off commode, and in and out of shower chair, she needs to be washed once on the shower chair, she needs to be dressed, she can wash up a bit and brush her teeth with just setup, she can feed herself and she can wheel around in her wheelchair independently. She can make her own coffee (we have a flavia, so she just opens the door on the coffeemaker, puts in a pod, closes it and pushes the button. Cups are on hooks next to it on the wall), and she can do stuff on the table top or where she can reach it from her chair…She’s depressed and bored so sometimes that’s hard to manage…especially her boredom 😛 Her marriage didn’t survive her stroke either, and that really destroyed her.

When she first came home in 04, I was pre-nursing and had to quit my job and put my education on hold. I was able to finish along the way though.

Right now she has skillfully snookered me into keeping a baby goat in the house that didn’t have a good start…(in a muck bucket, not running amok around the house - whatya take me for?)…coyly told me that her pain level went up when she was worried about Molly being outside with the big kids…so Molly’s in the house in a muck bucket, next to mom, a bit longer than I planned or that is necessary but what the heck, it’s the small things in life. 🤷 But I’m sure you won’t have to worry about baby goats regardless of what works for you and your family with regards to your mom’s plan of care 🙂

You really just have to do what you can do. I can tell you that I wouldn’t change a thing. Our parents care for us when we are too weak and vulnerable to care for ourselves, and we in turn should do the same for them to the best of our ability. Only you know what your capabilities are 🙂
 
filiaecclesia said:
The reality is that with both the worsening dementia and her extreme physical frailty, I may not be able to have her in our home. In the center of my heart is the question: am I doing enough, or am I shirking my duty to her by not having her live with us now?
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How would you be shirking your responsibilities to your mother by providing her with the best medical care you can?

I have no personal experience caring for aged relatives (yet), but I watched a close friend care for her father, who developed early onset Alzheimer’s. She and her husband cared for him until he became a wanderer (e.g., he’d leave the house, usually in the middle of the night, and either get lost on the street or try to get into neighbors’ homes) and he started hitting Phyllis. I know she agonized over the decision, but when her home wasn’t a safe place for him or for her, did she have a lot of choice?

I think other posters have given you some excellent advice as well as online resources for you to explore. Pray lots.

Luna
 
Rence, I loved your story. I agree, these this can be done! I think its our responibility to care for our loved ones. When I had to act on that belief, it was hard, but I trusted God to show me a way, one problem at a time, and He did. And its encouraging to see he has for you, too! The goat story is hilarious!

it helps to remeber God’s ways are not oure ways. I went to a counselor for about a year about the diffiucltiy of putting together a home with my mom and son. She immediately advised putting my MOm in a home, even though I made it clear I wanted to make it work. I stuck with the counseling, but the counselor never changed her goal. I realized she was not Christian, and left it. And it has worked out, as i said…

I just wanted to comment to Luna that in my opionion, her freinds obstacles coudl have been overcome. Counselors from Alzheimers Association are a great help with suggestionsw to keep things working!
Luna_Lovecraft said:
…
I have no personal experience caring for aged relatives (yet), but I watched a close friend care for her father, who developed early onset Alzheimer’s. She and her husband cared for him until he became a wanderer (e.g., he’d leave the house, usually in the middle of the night, and either get lost on the street or try to get into neighbors’ homes) and he started hitting Phyllis. I know she agonized over the decision, but when her home wasn’t a safe place for him or for her, did she have a lot of choice?
…Luna
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I am sure ther are times you have to move them out, and your friend may have had reasons other than this, but thee two things are, IMO very fixable. First, my mother did argue and fight. It was a stage. She tried to control the TV and when we went to bed. She actually physically fought me once over this. It pains me my son still remembers this. I had not yet learned a lot, but had put up with a lot of that stuff I posted. I was trying to defend my son’s peace in the home, and when she unplugged the show he was watchign, I would not give up the fight… I learned to hide the controls from her, move the plug so its not accessible, to not argue with her, and to very very pleasantly and positively state how we were doing things. Tone of voice does a lot. My built up fear of confronting her was what she was reactive to. My fear made her feel she was in control. When I took control and was positive, the fights never happened again. Another thing we tried was ignoring her when she was raging. Then when she calmed, talked to her pleasantly as if she had not just raged… Anyway, that’s over. A lot positive has happened since and I do not anticipate that problem again. * I also think it could have been be solved for your friend.* She probably just lacked positive can-do people to tell her how. Just people sympathetic to her exhaustion, offering up the only solution they knew: outside care.

My mother also took to wandering. I found it exhausting to be home with her and always have to have a quiet house and be listening for her to sneak out the door. And convincing her NOT to go walk to her sister’s or her other house (because there is no other house and her sister is a 3 day walk away) was impossible of course. Still she would get out, and I spent many stressful times searching for her. I bought her the info-bracelet and had it permanently afixed by the jeweler, but that did not solve my having to be vigilantly watchful. Then I had a locksmith install a chain door lock at the TOP of the two doors she leaves. (He thought this was “dangerous”; I said not as dangerous as her leaving.) Well she cannot figure how to undo the chainlock. So she is locked in with us at night and during the day when I am home. I have peace now! I also have a bathroom lock on the laundry door so I can go out that door and get back in and lock her in the house for quick errands like picking up my son from places…

So I realize Luna you have not caretaken. I am just saying, there are ways to solve these problems! Just think, parents raise children their entire lives who are handicapped with much more complicated things than dementia. It can be done! There are ways to cope with hardships to make them not e hardships, too!
 
Mom was diagnoised with Alzheimer’s at 86. We found an excellent doctor who was studying the disease and put her on trial drugs. Every three months she would go in for an evaluation and adjust the meds accordingly. At 90 we moved her into our building in her own apartment. She blossomed. She continued to live on her own until she was 93 and then we moved her into our spare bedroom. Still had a good quality of life. We did not force her to eat anything she didn’t want to. Her taste reverted back to those of an infant. She loved Boost and that is what sustained her. One month before her 94 birthday, she died peacfully in her room. We were very happy to have kept her with us. The day she died, hospice was bringing a hosptial bed in. We would have continued but at this point if it got really difficult causing both of us to be exhausted, I would have opted that she go to a nursing home. Fortunately, we did not have to face that decision.
 
aicirt said:
Mom was diagnoised with Alzheimer’s at 86. We found an excellent doctor who was studying the disease and put her on trial drugs. Every three months she would go in for an evaluation and adjust the meds accordingly. At 90 we moved her into our building in her own apartment. She blossomed. She continued to live on her own until she was 93 and then we moved her into our spare bedroom. Still had a good quality of life. We did not force her to eat anything she didn’t want to. Her taste reverted back to those of an infant. She loved Boost and that is what sustained her. One month before her 94 birthday, she died peacfully in her room. We were very happy to have kept her with us. The day she died, hospice was bringing a hosptial bed in. We would have continued but at this point if it got really difficult causing both of us to be exhausted, I would have opted that she go to a nursing home. Fortunately, we did not have to face that decision.
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How wonderful. I really see God’s hand in that. I think when you take in your loved one you do it in partnership with God. You cannot predict what future needs will be. You just take it one day at a time. And that seemed to work perfect with you. What an uplifting story!
 
Oh_Charlotte said:
How wonderful. I really see God’s hand in that. I think when you take in your loved one you do it in partnership with God. You cannot predict what future needs will be. You just take it one day at a time. And that seemed to work perfect with you. What an uplifting story!
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Well thank you! Appreciate your compliments. We were very fortunate to have the doctor we had. I’ve heard too many stories of doctors who do not offer meds. I have no idea why. They not only benefit the patient but also the caregivers. We had just one episode of Mom acting out. Her doctor immediately prescribed an anti-psychotic (she wasn’t but it helped her). If the meds had not calmed her, I could not have cared for her. It would have been an impossible and draining situation.
 
I think the question depends on whether you can supply a safe environment for her in your home for long enough to justify the upheaval of adding another move to the end of her life. For instance, my mother, who is now rather severely demented, still lives in her own home. She has had to have 24 hour supervision and there had to be a remote cut-off installed for the kitchen stove and oven. My dad also needed care that would have been too much for my mother in her best days, so this “supervision” wasn’t really something she was aware of. She is physically unable to wander far, and they had a secret cut-off switch installed in the car so that she couldn’t drive off. She has a very limited range of motion in her arms, so chemicals that would be dangerous for her can be kept out of reach. For instance, the alcohol had to be hidden, because she pours herself drinks and didn’t remember. The cookies had to be hidden, because she was munching all day without being aware of it and putting on far too much weight.

In other words, count the cost and figure out whether she’ll be able to stay in your home for a good amount of time without being unsafe to herself, unduly disruptive to the rest of the family, and if you’ll be able to give her the social contact she needs. If you have to be gone three nights a week for kids’ sports, for instance, you’ll need to decide if respite care can cover that need. You don’t want to settle her into your house just long enough to feel at home before deciding it won’t work, and then move her again.

You also have to ask if your home is accessible enough for her, if the bathing and toileting areas can be made safe, if she can get in and out of the house in her condition or in a somewhat worse condition. Would she be stranded in a bedroom or “mother in law” area far from the social center of the house?

My advice would be not to move her into your home if you foresee having to move her out again in the near future. Otherwise, since you are used to having a three-generation household, I think you can judge pretty well.
 
Good morning everyone, and thank you SO much for all your advice, experience, and encouragement.

All your comments are duly taken to heart, and I plan to reread them in the days ahead. My mom is still at the rehab, where she is very unhappy, but it’s only been a week, and she needs to try and get at least a little stronger so I can handle her care at home. She needs assistance with everything physically, and I’ve been told that her levels of agitation soar when she’s left alone.

I spoke with her doc last night, and he’ll try a new med at night to help her deal with the agitation, which may allow us to cut back on the paid aid we’ve been having sit with her from 7pm to 7am at exorbitant rates.

I was with her 4 hours yesterday, and until she had to return home, my sister was at the rehab all day. That doesn’t seem possible for me, since I have a family and part-time job. But from all you have said, some kind of healthy balance may be possible.

I know our good Lord is working out His will for us all through this unusual Lenten journey. This has all come on so incredibly quickly with no prelude at all. No experience, no idea what’s going on initially with my mom physically, much less mentally. A very complex package! But there is no choice, I’m IT for her, and a privilege it is.

Let’s pray for each other, that we will be given the strength and perseverance to do our best to serve Our Lord by serving our loved ones. Thank you all so much - you have touched my heart with your great and generous kindness in reaching out to me.

A~
 
Dear one,

As said earlier, you are not alone. Do not be afraid to ask about help and to take advantage of what is available. Yes this will require changes in your life and lifestyle, but this is what we do for those we love.

AND - I want to let you know that there can be humor too. In fact a sense of humor is necessay if not essential to prevent being overwhelmed.

Just to give you a good sampling of what I mean, HERE is a thread I started some time back on the ALZ message boards. The things posted will probably make you laugh AND cry - but its been very helpful to a lot of people trying to put things into perspective.

Caveat: It appears that when the ALZ board moved to a new server (or whatever) the archived posts got a bit mixed up…how very “dementia” like of them…😛

Peace
James
 
JRKH said:
Just to give you a good sampling of what I mean, HERE is a thread I started some time back on the ALZ message boards. The things posted will probably make you laugh AND cry - but its been very helpful to a lot of people trying to put things into perspective.
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James,

I checked out this link again, and to be honest, it actually made me feel worse. I am not sure that I can deal with all of the things that come with caring for a loved one with this disease. However, it sounds like everyone here is finding a way. I feel nothing but bad about not being able to do what everyone else thinks I should be doing for my MIL. In her best days 25 years ago, she was a cold unfriendly person, not just to me, but to everyone. It is, of course, worse now. She thinks she is fine, my husband won’t admit to her that she is no longer capable of calling the shots for herself. (She has diabetes, hypertension, high cholesterol as well and takes about 6 medications daily.) When I try to intervene and suggest that she needs more supervision, it is not heeded. When we send our eldest son over to visit, she asks when he is leaving and grouchy if he doesn’t leave. She is outright nasty to my daughter for absolutely no reason. My children do not really want to be around her, and she likes being alone as she has always been a loner.

No, there is no way that she can come live here, so please don’t suggest that.
I suppose I am writing this for the people out there reading this like me. No, I don’t think that everyone is capable of stepping up and taking care of their family. I just don’t have the expertise to deal with the way her brain functions. I know what I can do, and this isn’t it.
 
Irishmom2 said:
James,

I checked out this link again, and to be honest, it actually made me feel worse. I am not sure that I can deal with all of the things that come with caring for a loved one with this disease. However, it sounds like everyone here is finding a way. I feel nothing but bad about not being able to do what everyone else thinks I should be doing for my MIL. In her best days 25 years ago, she was a cold unfriendly person, not just to me, but to everyone. It is, of course, worse now. She thinks she is fine, my husband won’t admit to her that she is no longer capable of calling the shots for herself. (She has diabetes, hypertension, high cholesterol as well and takes about 6 medications daily.) When I try to intervene and suggest that she needs more supervision, it is not heeded. When we send our eldest son over to visit, she asks when he is leaving and grouchy if he doesn’t leave. She is outright nasty to my daughter for absolutely no reason. My children do not really want to be around her, and she likes being alone as she has always been a loner.

No, there is no way that she can come live here, so please don’t suggest that.
I suppose I am writing this for the people out there reading this like me. No, I don’t think that everyone is capable of stepping up and taking care of their family. I just don’t have the expertise to deal with the way her brain functions. I know what I can do, and this isn’t it.
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Every case is different. There are families who can make it work and there are families where it simply Can’t. To me, what you describe doesn’t sound like an unwillingness on your part. It sounds more like a realization that, for her and her personality etc. a different solution is needed.
So don’t feel bad. I’m sure you have prayed over this matter and are doing what you believe to be right. Trust in God’s guidance on this.

As I said in my initial response…it doesn’t matter what decision is ultimately reach, we all feel guilty to one extent or another. It’s an emotional time.

Peace
James
 
There is a point at which you will be unable to provide the kind of palliative care and professional attention that your mother will need. You may find, however, that having respite care in your home might be less expensive and less upsetting to your mom for some period of time before she needs out-of-home care. Do be ready to move her elsewhere, though, if that is necessary. There was a day when all of this was done at home, but that was also the day when there was little difference between what a professional nurse and a well-trained layperson could do in the area of day-to-day care.

The Alzheimer’s Association has put out several documents on this, including one on care for dementia patients who are candidates for nursing homes. Keep in mind that the kind of professional care available makes all the difference in whether nursing care, group home care, family home care, or something akin to hospice is going to make your mom the most comfortable and sustain her life and remaining functions the best.

Do not take on the care of a demented person without a good plan for respite for yourself and your family. Consult several people in the field as you make the decision, since everyone has their own angle and bias about what’s the best. Also do what you can to educate yourself in preventative care. I was surprised to find, for instance, that doing careful oral hygiene after meals helps to prevent aspiration of stray bits of food into the lungs by the demented patient, which in turn lowers the incidence of pneumonia. Tube feeding, OTOH, usually does not improve nutritional status and can worsen a patient’s condition.

alz.org/
alz.org/national/documents/endoflifelitreview.pdf
alzbrain.org/pdf/handouts/8007.%20MEDICAL%20CARE%20FOR%20THE%20DEMENTIA%20PATIENT-NEW.pdf

etc…my goal is not to give you medical advice, but rather to caution you to get advice about all that you’re taking on. This is one area where you will suffer a lot if you try to re-invent the wheel yourself. Education will save you a lot of angst, and you have a path to travel that will be quite hard enough without any extras on that!
 
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