Carrying Guilt - Mom with Alzheimers

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I moved my mom out of assisted living into a “home”. She is 89 and has Alzheimer’s. She is now in the stage of believing the FBI is after her and people are being killed where she lives. Some days her mind is “almost clear” and other days she doesn’t know what month it is. She always begs me to let her move in with me. It breaks my heart. She needs 24-hour care and the guilt I carry overwhelms me at times. I’m sure there are others who have been or are still in my position. Any suggestions?
 
Dear friend, guilt is one of the unfortunate sufferings of those who realistically must put their aged parent into a home. The pain of their natural wishes is also the suffering of the parents when they are lucid.

You know, practically speaking, that you don’t have the facilities to take care of your very-aged mother in emergencies, and most of the time you couldn’t give her the protection and care she needs when deep in dementia, and she will only get worse, not better.

Yes, many have been in your position. My step-mother arrived at a time when my Dad had no choice but to place her in a home. Even so, she outlived him by four years after an Alzheimer’s journey of ten years. It troubled my Dad greatly, but she had gone beyond his care and health capabilities.

It was a very hard and painful decision for you to make, and you knew it was the right one.
Remember when your dear mother had to say no to you as a child, when you desperately wanted to do something or have something? You might have pestered her, but she knew it wasn’t the right thing to allow you.
Now dear one, the roles are reversed and you can’t allow her to have what she sometimes wants.

Prayers for you mother and you.
 
I’m so sorry. My mom had dementia, and one of our other relatives had Alzheimer’s. His poor wife eventually had to take him to an Alzheimer’s care unit, too. They had enough money, they hired live-in help for awhile, but it got to the point that there was no safe way to keep him at home any more. If your mom doesn’t have enough memory for assisted living, you’d practically have to have a locked-down section of your house to keep her safe, too. My guess is that you do not have that, do you? Many parents are quite fine with assisted living instead of living with their children, because it is more interesting and they have more independence. When the time is over for assisted living, though, the time for living at your house would have been over, too.

The best and most honest answer for your mom is, “Mom, it would be great to live together, but my house isn’t safe for you.” Do not elaborate, because you don’t want to insult her or invite argument. Just say, “oh, I don’t want to go into it, but trust me, if you knew the situation, you’d agree. It’s not safe.” Well, it absolutely isn’t, so do not feel guilty!

There are two hints I got from a geriatric nurse that helped a lot. One is that distraction is your friend. If you can distract her from an unhappy train of thought or an impossible goal, that is a good way to go. Use that vanishing short-term memory to your advantage, and to hers.

The other thing the nurse suggested is to look for what is bothering her, and address that. For instance, if she’s looking for her mother, of course you don’t want to tell her that her mother has been dead for 30 years. That would be crushing news to her! Instead, you want to get at what has her concerned–“She isn’t here right now. Are you worried about her? Do you need something that she has?”

When my mom was worried about her mom, I’d simply tell her that another family member had it taken care of. She was good with that. You don’t want to imply she ought to have known, though. Instead, you say, “I can understand why you’d be worried, if you thought no one had remembered to pick her up at the train station! That would be upsetting!Everything is OK, though. You can rest easy. She’s safe, it is all taken care of.”

If your mom wants to see her, you can say, “She couldn’t be here today. I wish she could, too, that would be great. In the meantime, why don’t the two of us talk?” Do not say she can never see her mother again. Say that she cannot see her right now, and you’re sorry but you don’t have any information about her schedule, so you’ll both have to live with that.

As far as the FBI thing goes, you can listen and admit that you would be worried about that kind of thing, too. Then say something optimistic: “I didn’t see a single FBI guy here today, though. We’re safe right now. Let’s talk.”

One distraction that sometimes works very well is to ask her to tell her a story about her past so familiar to you that you can guide her through it, only act as if you are reminiscing and aren’t quite sure about all the details, either. The farther back, the better she will remember it. If she gets details wrong, that is OK. As far as I was concerned, the whole goal was to get some good hormones going in her brain and get some good thought packets flying around in there, sort of like making suggestions to a dreamer.

That is what dementia always seemed to me that it must be like: being in a dream. The facts don’t make sense, you aren’t always sure what is going on or what has happened, weird ideas come to you all done up in a blender, and you try to do things in the craziest ways, but it all makes sense at the time. Be the person in her dream that listens, believes that she is not lying or crazy, and reassures.

Don’t take anything she says or does more personally than you’d take it if she did it in a dream. Hang in there, too. There is very little chance that she remembers or dwells on any of your conversations with you as much as you do. It is OK to let go. It is OK to remind yourself that she will say things in a demented state that she would never say if she were clear-headed. It is OK to remind yourself that the world is very different than it appears to her, and yet you are both doing your best.

If you can have someone lined up to talk to after you see her, to listen to your worries and then to distract you away from that, too, that would be a good thing, too. As the airlines say, you can’t help anyone else unless your own oxygen is flowing! 👍

I think the Alzheimer’s Association has a website that might be of help to you, too. Another idea is to ask the care center if they know of support groups for the families of dementia patients. The less you feel you are going this alone, the better.

Good luck!
 
I moved my mom out of assisted living into a “home”. She is 89 and has Alzheimer’s. She is now in the stage of believing the FBI is after her and people are being killed where she lives. Some days her mind is “almost clear” and other days she doesn’t know what month it is. She always begs me to let her move in with me. It breaks my heart. She needs 24-hour care and the guilt I carry overwhelms me at times. I’m sure there are others who have been or are still in my position. Any suggestions?
Some great advice so far.
I just ended my journey with my wife - she passed 6 months ago.
In our case I was able to keep her at home and she passed here on All Saints day.
It was a tough decision, but between her social security and our savings - along with living frugally - we were able to make it work.
The blessings of being a full time caregiver to my loved one were tremendous. Beyond what I could have imagined. Of course my lady was very easy to take care of. I know not all dementia patients are.

But I can tell you that I have guilt too…Did I take the best care of her, could I have done more etc…It is inevitable.

I don’t know how long your mom was in the assisted living arrangement - but moving people from a familiar environment to an unfamiliar can cause these kinds of problems. There is probably nothing much to be done. What meds is she on? My DW was on Reminyl (sp?) and later on Aricept and Lorazipam (sp?) for anxiety.

Remember too that you have to be her advocate with the facility. Such places can be under-staffed and care can suffer. This in itself can be a full time job.

No matter the course you ultimately take, guilt will be a part of that journey…

May God Bless you and her.

Peace
James
 
👍 for all the posts so far.

Another thing to keep in mind… Honoring your parents as in the 10 commandments can also mean taking proper care of them in their time of need.
When my maternal grandmother reached this stage in her life, my mom was by herself and has never been physically strong - there was no way for her to do the physical aspects required to keep G.Ma healthy. So we did what we could to care for her by getting her the care from people that know how to do so properly and with love…

When G.Ma passed, most of the nursing staff and the Doctors came either to the funeral or the service (they took shifts so that they could all come to one or the other!), and not a dry eye the one, they’d came to love her a bit too; however, that was G.Ma, everyone that met her liked her.

SO I pray that your mother has the same loving and caring staff taking care of her as my G.Ma had for her.

BTW: If she hasn’t receive the Sacrament of Healing, try to arrange for this as soon as possible.
 
I just ended my journey with my wife - she passed 6 months ago.
James, I have read many of your truthful and helpful posts regarding your wife. If you had posted that she passed away 6 months ago, I am sorry, I must have missed that one. You were a wonderful, loving husband and caregiver to her and you must miss her greatly. May she rest in peace.

My husband made the decision that it was time for his mom to go into a nursing home about 3 weeks ago. He agonized over his decision because like you, woodwonder, he felt guilty about doing so. But deep in his heart, I think he knows it is for the best. In addition to her Alzheimer’s, she has other medical issues. Now, she is getting 24 hour care and my husband is able to relax a bit and not always be worrying about his mom.

The distraction methods that other people have mentioned really does help. It is usually pretty easy to turn the conversation in another direction. Whenever my MIL asks why she us there, we just say that her doctor wants her to stay there. She has lost all sense of time and thinks she has been there days instead of weeks.

It is not always easy to make the decision, but once it is made, the guilt will lessen as time goes by, especially once your mom gets more settled in.
 
James, I have read many of your truthful and helpful posts regarding your wife. If you had posted that she passed away 6 months ago, I am sorry, I must have missed that one. You were a wonderful, loving husband and caregiver to her and you must miss her greatly. May she rest in peace.
Yes I did post her passing - thank you for your kind words. She is indeed at peace.
My husband made the decision that it was time for his mom to go into a nursing home about 3 weeks ago. He agonized over his decision because like you, woodwonder, he felt guilty about doing so. But deep in his heart, I think he knows it is for the best. In addition to her Alzheimer’s, she has other medical issues. Now, she is getting 24 hour care and my husband is able to relax a bit and not always be worrying about his mom.
The distraction methods that other people have mentioned really does help. It is usually pretty easy to turn the conversation in another direction. Whenever my MIL asks why she us there, we just say that her doctor wants her to stay there. She has lost all sense of time and thinks she has been there days instead of weeks.
It is not always easy to make the decision, but once it is made, the guilt will lessen as time goes by, especially once your mom gets more settled in.
Good words here…👍

One thing to remember though is that every dementia patient is different. Some, like my lady, are easy going and (mostly) a joy to care for. Not that it isn’t heart wrenching to watch them deteriorate). Others can be more difficult and combative. Some never do settle down…others, with the right combination of meds and loving care, can enjoy their last days.
I agree that the guilt will lessen - but I think it will ebb and flow. At least that has been my experience.

There are support groups for this sort of thing. you might consider contacting the Alzheimer’s association near you.

Peace
James
 
I had to figure out what to say to my cousin whose family placed her in a home. She wanted me to take her home with me. I said that the doctor is taking care of her and he hasn’t discharged you yet. Didn’t know if that was a right or wrong way to put it.
 
I moved my mom out of assisted living into a “home”. She is 89 and has Alzheimer’s. She is now in the stage of believing the FBI is after her and people are being killed where she lives. Some days her mind is “almost clear” and other days she doesn’t know what month it is. She always begs me to let her move in with me. It breaks my heart. She needs 24-hour care and the guilt I carry overwhelms me at times. I’m sure there are others who have been or are still in my position. Any suggestions?
Praying for your intentions & for your Mother.
 
If it helps, my mother was a registered Nurse, and had worked in geriatrics all her life. She was especially trained in Alzheimers and Dementia, that was her specialty. And yet, when my grandmother had alzheimers, their came a a time where she could no longer provide adequate care herself and had to put her in the nursing home. So if my mom, with her training and background, working with Alzhiemer’s patients all her life couldn’t handle the 24/7 care on her own, you should not feel guilty that you cannot do so.

My mom did care for her in the early stages at home, and we installed monitors to wake us up if she got up at night, etc. but eventually it physically is too much for one person. It just is. Someone has to lift them when they fall, supervise them 24/7, etc. No one person can do that, and a home is not set up to deal with that.

Sometimes the best you can do won’t be appreciated. But it isn’t really HER saying these things. It’s the disease.
 
If it helps, my mother was a registered Nurse, and had worked in geriatrics all her life. She was especially trained in Alzheimers and Dementia, that was her specialty. And yet, when my grandmother had alzheimers, their came a a time where she could no longer provide adequate care herself and had to put her in the nursing home. So if my mom, with her training and background, working with Alzhiemer’s patients all her life couldn’t handle the 24/7 care on her own, you should not feel guilty that you cannot do so.

My mom did care for her in the early stages at home, and we installed monitors to wake us up if she got up at night, etc. but eventually it physically is too much for one person. It just is. Someone has to lift them when they fall, supervise them 24/7, etc. No one person can do that, and a home is not set up to deal with that.

Sometimes the best you can do won’t be appreciated. But it isn’t really HER saying these things. It’s the disease.
AMEN!!!
Great point about the disease talking…
It’s hard not to take things personally - but it is important to remember this fact. Much of the time, it is the disease talking.
Meet her where she is, in whatever delusion or whatever, and try to deal with it calmly.

Peace
James
 
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