Dementia

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woodwonder

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I am having a difficult time dealing with my 88-year-old mother who has dementia. She lives in a group home and is totally miserable. The guilt I am carrying is so heavy it is drastically interfering with my life. Can anyone direct me to scripture that can help me with this burden? A book? An author? God bless everyone who can help me.
 
Would a prayer work?

My Lord God,
I have no idea where I’m going. I do not see the road ahead of me.
I cannot know for certain where it will end. Nor do I really know myself,
and the fact that I think that I am following your will doesn not mean that I am actually doing so.
But I believe that the desire to please you does in fact pleast you.
And I hope I have that desire in all that I am doing.
I hope that I will never do anything apart from that desire.
And I know that if I do this,
you will lead me by the right road though I may know nothing about it.
Therefore will I trust you always though I may seem lost and in the shadow of death.
I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

You might want to find a support group in your area and/or find someone willing to do some respicare. That is, they will take care of your mom while you get a break. You sound like you need one.
 
My heart goes out to you. My father-in-law had Alzheimer’s and we eventually had to put him in a group home. Sometimes it’s the only thing you can do for various reasons such as not being able to be with the ill person at all times. (It would be dangerous to leave him/her alone.) Have you tried to find a support group for Alzheimer’s families? Maybe your mother has a different type of dementia but I think it would still help.

Also, try to find out why your mother doesn’t like the group home. It may be that she simply wants to be back in familiar surroundings but keep in mind that as the disease progresses that will come to mean the home of her childhood. I do not want to alarm you, but be prudent and check things out. Sometimes the caregivers in a particular home aren’t really that caring. Drop in unexpectedly now and then to make sure all is well.And, if not, find a different home.

Remember the serenity prayer. It goes along the lines of praying for peace to accept what can not be changed, courage to change what can be changed, and the wisdom to know the difference.

When I am in tough situations I like to remeber what St. Theresa of Avila said:
Code: 
"Let nothing disturb thee; nothing afright thee.
 Patient endurance attains to all things.
 All things are passing.
 God never changeth.
 Who God possesseth in nothing is wanting.
 Alone God sufficeth."
You can find that prayer in more modern English in the Catechism of the Catholic Church paragrah 227.
 
woodwonder said:
I am having a difficult time dealing with my 88-year-old mother who has dementia. She lives in a group home and is totally miserable. The guilt I am carrying is so heavy it is drastically interfering with my life. Can anyone direct me to scripture that can help me with this burden? A book? An author? God bless everyone who can help me.
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Guilt about what?
 
My grandmother had dementia and also had to live in a home for her own protection. It truly is dangerous to have a dementia patient at home unless the house has been modified and there is a caregiver present 24/7/365. Dementia patients randomly try to cook meals or go out in the middle of the night, for example. Sometime they start fires, sometimes they get lost. Dementia patients need constant supervision and most families cannot provide the required supervision all day and night for years on end.

Check out the facility. As others have said, drop in unexpectedly. If the facility is a good one, try to understand that your parent is in the safest environment possible and you have no reason to feel guilt. If the facility is providing substandard care, try to move your mother to a better facility.

How much of her belongings does she have with her? Dementia patients do seem to appreciate things that are familiar for as long as those things remain familiar. Some facilities permit bringing in the patients clothing, favorite wall decorations, a favorite easy chair, that kind of thing. Also, try to concentrate on the happy things in life. My grandmother very much liked birds. Even once she didn’t know us anymore and could do nothing for herself, she loved to look out of her window and see a bird feeder the facility allowed us to hang. She loved soft and comfy clothes, so every so often we would buy her a pajama set or a soft cotton shirt and sweat pants combo. Even when she was not herself, she loved the jammies and sweats. Little things like that cheered her up and made her much happier and much more cooperative with the staff.
 
woodwonder said:
I am having a difficult time dealing with my 88-year-old mother who has dementia. She lives in a group home and is totally miserable. The guilt I am carrying is so heavy it is drastically interfering with my life. Can anyone direct me to scripture that can help me with this burden? A book? An author? God bless everyone who can help me.
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Yes, it is difficult. She’s your mother, and it is very honorable that you feel the way you do; faithful children want the best for their parents.

However, it is important to think with your mind and not your emotions on that matter. Some people with dementia cannot function by themselves, and require 24/7 care. Unless a person is trained in taking care of such a person, and has the necessary support system typically involving other people, it may very well be best that your mother be in a group home.

I have unfortunately dealt with this situation personally, both with inlaws and my own family, and do not feel one ounce of guilt about any of it. Sadness, yes; guilt, no. The reason is that I always think with my mind and do what I believe is best for them, and not what I believe is best for my emotional well being.
 
woodwonder said:
I am having a difficult time dealing with my 88-year-old mother who has dementia. She lives in a group home and is totally miserable. The guilt I am carrying is so heavy it is drastically interfering with my life. Can anyone direct me to scripture that can help me with this burden? A book? An author? God bless everyone who can help me.
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woodwonder, I really feel for you. My 77 year old father has dementia but my mother is still caring for him in their home with our support. A couple of days after Christmas, he wandered out for a walk and we couldn’t find him for 7 hours. It was terrifying.

In a talk on dementia that we attended, we were told that dementia patients can suffer awful depression or anxiety and that it’s very helpful to have some medication to help them during that transition between knowing somewhat what’s happening to them and moving past that stage. It’s worth talking to her doctor about some medication to lift her spirits.

God bless.
 
God grant you peace. God grant your mother peace.

You know you’re doing what you think best and can manage.
We can’t do more that we can actually manage.

Your mother may be at a stage of dementia that she would be unhappy wherever she is.
I repeat, because I suspect this is true and it needs to sink into your heart and mind.
Your dear mother may be at a stage of dementia where she is unhappy whatever you do and wherever she lives.

Loving wishes and prayers.
 
I never realized what this disease can do to people. It can be terrorizing. It is very difficult to deal with a person who truly believes their hallucinations. I can’t calm my mom down when she thinks she is in jail surrounded by police or people keep moving her around from one building to another. It’s scary to her and she doesn’t understand why I am not doing something about it. She gets angry at me. Why does this disease have to exist? I don’t understand it. To think my mom lives in this horrific world is very disturbing and upsetting. There’s nothing I can do to help her.
 
My grandmother lives in a residential memory care unit. She has dementia, but not as far progressed as some of the other residents. I often have wondered why this happens to people who were previously strong healthy active adults to be reduced to babbling and wearing depends and not being able to feed themselves. Sometimes my grandmother knows who I am and sometimes she doesn’t.

The only thing I have concluded is that they are there to teach us, to show us that we must show compassion, care and love for our parents. The aids who work there are miracle workers full of love and tenderness that are such examples of God’s love. There is one resident in particular who is very young, only about 55. He has early Alzheimer’s and is completely unaware of his surroundings. They care for him so tenderly and I think often of how he would see his life now, if he could have seen a glimpse of it while he was still himself. He is being cared for with the respect he deserves no matter his mental state, if that makes sense.

The guilt is never ending, I think. When I leave my grandmother I feel her eyes on my back and I walk away to my life while she sits there. My mother visits six days a week, and we still feel that pain. I don’t have a scripture for you, just the fact that you are far from alone. Prayers said for you and your mother.
 
Monica Dodds wrote a books from a Catholic perspective: Caring for You Aging Parents, a guide for Catholic Families. (Or something like that.) I don’t remember if it addressed dementia specifically but I found it very helpful.

There is another book called something like “prayers for care givers” that I found at a Catholic bookstore too. Even if you are not caring for your mother full time, it is clear from your post that you care deeply for your mother. My prayers for you at this difficult but beautiful time of life.
 
This is a great burden for you and asking Jesus to share it with you is the only way for you to know you have done the very best you can for your mother. A mother wants her child safe in God’s love and the child loves the mother unconditionally in the beginning. Aging in life brings debris that is disturbing. Dementia/Alzheimer is the label. If you as the caregiver first ask Our Lord to help you, the strength you need will be there to handle the care. When your mother complains or cries in fear, soothe her as a little child that she is okay and that you will take care of her. Sing a song, hold her hand, bathe, clothe, toilet, feed and protect. Its a reversed role. If you are able to care for your mother in your home, it is demanding 24/7.
You would need to define a schedule of care that you could handle and find at least two people who can relieve you to shop and give you time for yourself - at least 4 hours a day, two/three days per week. If finances enable you to hire help, do it. You can contact community services for help in this undertaking and they may have a program that offers home aides through their organization. From personal experience with mother and mother-in law, it is no walk in the park. Breaking hips, falls, deteriorating bodies - happen. It happens in hospitals, nursing homes, group homes whatever. Baby monitor, area tvs, locks, safety proofed rooms, walkers, disposable protection, and many more inventions will help, also an electric hospital bed and wheel chair. Talk about everything with a counselor on aging and don’t forget to ask Jesus first then quietly listen. Love & prayers
for you.:console:
 
I would ask for a geri-psych consult to see if there is any medication that could help calm her. There is nothing you can say or do to convince her the hallucinations aren’t real. Quality of life is still important. I personally would rather be a little groggy most of the time than terrified I was being held by the police.

The hospital I work in has an entire geri-psych department, complete with an (name removed by moderator)atient unit for the patients that are so out of control their behavior needs to be stabilized before they can return to their group home (or where-ever they live). The right medications cannot reverse dementia, but can make it a lot less unpleasant to live with.
 
We found a support group on our parish and it was a huge help. They told us a lot on how to understand the disease. You need to go into their world, you can’t change them or make them understand what they are experiencing is not true.

My mother never was scared of things like you say your mother is though so I am not sure how to handle that. She did hallucinate though and we had to say we saw the animals she saw. If we disagreed with her she got upset. We just talked about them in a matter fact way and not like they would hurt us.
 
woodwonder said:
I never realized what this disease can do to people. It can be terrorizing. It is very difficult to deal with a person who truly believes their hallucinations. I can’t calm my mom down when she thinks she is in jail surrounded by police or people keep moving her around from one building to another. It’s scary to her and she doesn’t understand why I am not doing something about it. She gets angry at me. Why does this disease have to exist? I don’t understand it. To think my mom lives in this horrific world is very disturbing and upsetting. There’s nothing I can do to help her.
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Are you sure it’s a hallucination?
Ie:if the “careworkers” are uncaring and aggressive in nature,it can very much feel/perceive to a vulnerable and confused person with Dementia that she is in a jail surrounded by prison warden like people.

What is it that is making your mum miserable?
Is it that she has surroundings devoid of stimulation or is it she doesn’t like the staff and feels they are short/aggressive/dominating towards her or is depression due to the illness itself or reactive depression due to knowing what she’s lost?

It’s extremely important that you listen to your mums feelings and that she is treated with dignity.
Having minimal stress is very important too and if she’s in an environment being treated poorly that’s the last thing she deserves/needs on top of everything else.

I think first it’s important to ascertain whether she really is having hallucinations or whether the staff actually are moving her around and treating her poorly and the right person to ask is your mum and not the carestaff.
You should always believe your mums version over their opinion of her state/circumstances unless what she tells you is obviously bizarre/highly unlikely-eg:if she said she thought she was 15 years old and abducted by 20 foot aliens last night.

Your mums emotional and mental comfort is what’s most important and sometimes these care homes are actually the opposite of caring and very traumatic for the person.
Some people with Dementias or even some forms of Schizophrenia,become very fearful in the face of staff that treat them aggressively as they are no longer necessarily able to perceive the full picture of what’s going on around them or why they are being moved to another room for example or that the nurse that treats them bad that it’s the nurses problem and that she’s just a nasty individual.
Instead then can respond with confusion,fear,hysterical crying,hitting the careworker etc.
It’s a natural reaction in their situation and it’s important your mum and others are treated with respect,kindness and much gentleness.

Alternatively,if the home is not the problem and your mum actually is hallucinating,then the best thing you can do is comfort and reassure her as Antipsychotics have been found to make quality of life worse not better.

In my view,safety shouldn’t come at the cost of quality of life.
Physical safety gives reassurance to the family but what does it due for the person to be physically safe but living in misery/“hell”?
There are ways for people with Dementia to stay living with family but it involves modifications like locking doors,removing sharp knives,cigarette matches,safety proofing electricity etc,making the stove not usable etc…
Having your mum live with you might be an option but first you’d need carer support etc to help you.

At the end of the day,your mum should be involved in whatever decisions are regarding her to the best capacity that she has and if something is making her miserable needs to be changed to improve her quality of life because it’s a often devastating illness and she needs as much happiness and autonomy as she can get out of life.

fightdementia.org.au/understanding-dementia/behaviour-changes.aspx

fightdementia.org.au/services/safety-issues.aspx

I wish the parishes had more fundraising to help families keep their loved one at home as it’s often money that’s a barrier.
 
woodwonder said:
I never realized what this disease can do to people. It can be terrorizing. It is very difficult to deal with a person who truly believes their hallucinations. I can’t calm my mom down when she thinks she is in jail surrounded by police or people keep moving her around from one building to another. It’s scary to her and she doesn’t understand why I am not doing something about it. She gets angry at me. Why does this disease have to exist? I don’t understand it. To think my mom lives in this horrific world is very disturbing and upsetting. There’s nothing I can do to help her.
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Is it possible to distract her? Distractibility is one of the bad things about dementia, but sometimes it can be your friend, too. My mother used to get very upset about things, but sometimes if she only heard, “I’m sorry to hear that. I can see why you’re feeling upset. That isn’t supposed to happen. I can’t do anything about it right now, but let’s have a nice talk, and when we are done I’ll do what I can to make sure that doesn’t happen any more.”

My aunt was upset because she had been trying and trying and she couldn’t reach her husband on the phone. Well, obviously I couldn’t tell her that he was dead. It would have been like hearing it the first time for her. Instead, I said, “Oh, I’m sorry, but he’s not near a phone. It won’t help to try to call him right now.” How did I know that, she wanted to know. “I dunno. I just know he isn’t somewhere where they have phone service. I’m sorry!” She accepted this and we had a nice talk. Did she start trying to call him again later? Maybe she did. We had some time out of that agitation, though. She got a rest from it. Who knows, though, maybe she didn’t remember she wanted to make that call for awhile.

My mom used to get very angry when I corrected her, but particularly when she was upset about something. Never tell the person there is no problem. Tell them you are sorry that you don’t understand exactly how to help them. Let them talk, be sympathetic, and distract them if you can.

Have you been in a dream, and no one will listen to you? I think that is what it must be like. A geriatric nurse told me the goal is to find out why the person is uset and to give them a resting place from that. For instance, sometimes the person trying to go home is looking for someone to listen to them seriously or talk to them about someone they know. They may only need reassurance that their loved ones are safe and that they will see them again. It doesn’t have to be right now; just knowing it will all be OK is sometimes enough. My mom was worried about her mother, and I told her that her older sisters will have it taken care of. That was enough. She just needed to know her worry was being taken care of, that it was OK. It would only have upset her more to tell her that both her mother and her sisters were already dead. If your mother doesn’t know someone is dead, don’t remind her. What she wants to know is that the person is OK, not whether they are dead or alive.

IOW, you don’t have to solve the problem. They don’t see that far ahead. You only have to help right now be better. You only have to believe that there is a real problem right now. If the person is that upset, there is a real problem. Your work is to figure out what it is and give a resting place from that. They don’t have to understand what the problem is. They only have to feel relief from the upset over it. Sometimes it doesn’t work, but sometimes just having someone take their problem seriously, even an idiot who doesn’t do anything to change anything, does help a little bit. Sometimes, that is the best you can do.

This is all very tiring, so be sure to find some way to take care of yourself. If you can find a counselor to talk to, I think it would help. My family members used to talk to each other all of the time, just so we could sort of “debrief” and have somewhere to talk to who would understand. It does help, so try to find it. As the airlines say, make sure your own oxygen mask is in place before you try to help someone else. That is true in a lot of life! I’m so sorry you have to go through this. Do find all the real-time support you can.
 
When my mother was living with me I had a women come in to stay with her while I went to my aunt’s funeral. The woman told my mother that I had gone to a funeral, I guess I should have not told the woman where I was going so she wouldn’t have told my mother that because my mother got it into her head that it was my sister who died.

When I came home and learned that is what my mother thought I immediately called my sister, who lived out of town, so she could talk to my mother. It’s just things like that one needs to be aware of that can make them upset. At that time my mother could tell me what she was upset over but imagine if she could not have told me. I would have had to try to figure it out and might have not be able to do it.
 
My mom begged me yesterday to let her move into my house with me. It broke my heart, it is so difficult. When I hung up with her she continued to call me all night long. I had to unplug my phone. This is terrible, she will not admit she needs 24-hour care. My entire family agrees she is in the correct place but the guilt is killing me. I think I might have a nervous breakdown over this. I feel so sorry for her, she is so miserable. I asked her if she wanted me to find another place for her to live and she says no they are very nice to her, she just wants to live in my house or my brother’s. Neither is possible. Sorry, I’m just venting…
 
woodwonder said:
I am having a difficult time dealing with my 88-year-old mother who has dementia. She lives in a group home and is totally miserable. The guilt I am carrying is so heavy it is drastically interfering with my life. Can anyone direct me to scripture that can help me with this burden? A book? An author? God bless everyone who can help me.
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I watched a video about a despondent elder in a nursing home who sparked back to life when he had been given his favorite music (part of an experiment, that worked).

Do you know what music she liked? Can you give her a CD player with headphones and a few CD’s?

Also, maybe a few compromises would be good for her, such as daily telephone calls. It may seem childish, but teddy bears can be really great. She has a lot to have to accept right now (living in a place she doesn’t want to be, a great sense of loss of family, illness and her aging) so as much comfort, love and reassurance as she can get is what she should have.

One more thing. Will they allow an overnight sleep over for her? Maybe once a week? You can stay with her one week, your sibling the next? I think any compromise should be granted, nobody wants to pass on in a place like that, so disconnected from Home and Family. Likely, she isn’t stupid. She knows it is a finality for her. Seems to me, she needs a great, great deal of comfort.
 
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