Have I made my mom's AD symptoms worse by her living with me?

Hello Deej,

Helen M’s advice is sound and it is good you have looked into the day care, as well as, a support group for yourself. The day care will indeed offer her appropriate, organized stimulation and the support group will help you find the resources and strength you will need through “The Long Good-bye”. I must admit, I have not gone to either because, at $17.00-20.00 an hour, for “day care”, Mom’s finances, and ours, would soon be depleted.

I had to bring my 95 year old mother to live with us a year ago. I too have struggled with all the same feelings you are going through right now. It definitely isn’t easy and the guilt that accompanies your choices can be overwhelming. My mother is the sweetest person on the face of the planet and when she says she wants to go home and feels like she is a burden, it breaks my heart. Of course she wants to return to the place she called home for over 50 years, it is only natural. Everything there was familiar, hers and it gave her peace, security and belonging. Here, although she has an entire floor to call “home” and I have brought most of her furniture for her, many pictures, along with cherished items, although familiar, it just isn’t the same. Her confusion has progressed so she doesn’t remember one second to the next and we spend the day repeating the same things over and over and over and over…………………………… When I brought her here, she had stage 4 renal failure and had already given up driving, thank Heaven, because of macular degeneration and glaucoma. I would pick her up two to three times a week and we would go out. I had noticed her slipping, but thought she was still okay, ~~ sort of. As long as I called daily and reminded her of appointments, did all her pills for the week (even with that she missed days), had Meals-on-Wheels (that she forgot to eat) because she wasn’t cooking properly and tons of other “little” prompts to help her maintain her autonomy. When I would arrive, she was often frustrated about dressing and not ready,

In some ways, I don’t think I truly wanted to see how far she had slipped, but, in retrospect, I realize she honestly wasn’t doing all that well. What finally sent us over the edge was a trip to another state for her nephew’s wedding. She had been dealing with an abscessed tooth that was to be removed the week we returned. Well, she had a meltdown in the hotel and had no clue where she was or who we were, so we packed up at 3:30 in the morning and headed home. She spent the next month in the hospital battling the infection, plus a UTI and ultimately she came to live with us. At times, to this day, she still thinks she is in the other state. I, too, was afraid the move to our home increased her confusion and I did everything in my power to get my Mom back and help her regain her independence. We had physical therapy, speech therapy, occupational therapy, Aricept (that caused internal bleeding and another hospital stay leading to, but not causing, her to become a Hospice patient), Namenda, Zoloft, you name it we tried it. Finally, I had to accept the fact, Mom was just never going to be the Mom I knew and had to face the tough reality that nothing I did ~~ or didn’t do ~~ would make her better……………..or worse.

I am sure you are feeling much the same and it isn’t an easy road because you sound like a very loving and caring daughter who wants only the best for her mother. Don’t beat yourself up, you truly aren’t doing anything wrong nor have you caused her to decline. I think you, just like I did, have begun to see how far the decline is when you are with them 24 hours a day. AD patients are good at “hiding” some of their deficits because they too are frightened, in denial and don’t want to face what is being lost. Your mother could also be finding relief in not having to struggle so hard to “cover-up” or stay independent now that she is in the safety of your home. Granted, the change is difficult; I won’t deny that or try to tell you otherwise. It would be strenuous on you or I too, if, all of a sudden, and without a choice, we were moved from the home we had known and loved for a good portion of our life, to live elsewhere, even if it is with someone we love and who loves us. There will be a period of adjustment for you all and some aspects may always be challenging, but, in time, things will even out and you will see some improvement. I will tell you, however, with every challenge or set-back you will notice a decline and even though there will be an improvement, she will never be back to where she was before the event.

I don’t know if any of my ramblings have helped or hindered you, but know you are doing the very best you possibly can and you will certainly face many challenges. However, you will also have many beautiful moments, happy times and cherished memories with your mother while she is living with you. It is a blessing to have our parents with us for each and every day we are granted. You have lovingly and selflessly taken her into your home, not electing to place her in either assisted living or a nursing home, for that alone, you are a saint and she has much to be grateful for. I am sure, deep down, she understands and is thankful for your unselfish love, even if it may not feel like that many times.. I find, even though my mother can no longer fully express her feelings or completely comprehend situations, she can still feel the love, security and joy we share having her with us and still being a family. I hope you too will find a small measure of peace knowing what a wonderful person you are and although you may feel inadequate and frustrated and there is so much more you tell yourself you could and want to do, remember, you are one person and giving every thing you can so your mother can have the best possible quality of care and love at this stage in her life. Some days I have to read the “Serenity Prayer” a million times every hour just to keep my sanity and remind myself it is okay I am not a perfect being. No doubt, I will certainly make mistakes, but I am doing the best I can, flaws and all. So, Deej, don’t forget you are a good person and to love yourself every step of this arduous journey.

I will be thinking of you and holding you in my prayers as you travel this difficult path.

I think moving her in with you was the safer alternative to her trying to live on her own with AD - the risk of her driving, wandering out her front door and getting lost (which happens more than you can even imagine), forgetting to turn the stove off, etc etc. Perhaps you notice it more now that she is with you 24 hours a day or you could be correct in that her disease has become worse. It sounds like you may benefit from attending a support group for Alz/Dementia - and the support group may know of a facility that has a "day care" for your mom that may provide the memory work activities that you think she is no longer getting. Hang in there, it's not you or the choice you made. I encourage you to attend a support group so you can get rid of some of the stress of caregiving and enjoy the time you have with your mother.

I think moving her in with you was the safer alternative to her trying to live on her own with AD - the risk of her driving, wandering out her front door and getting lost (which happens more than you can even imagine), forgetting to turn the stove off, etc etc. Perhaps you notice it more now that she is with you 24 hours a day or you could be correct in that her disease has become worse. It sounds like you may benefit from attending a support group for Alz/Dementia - and the support group may know of a facility that has a "day care" for your mom that may provide the memory work activities that you think she is no longer getting. Hang in there, it's not you or the choice you made. I encourage you to attend a support group so you can get rid of some of the stress of caregiving and enjoy the time you have with your mother.

I feel it has been the safer decision but just having hard time getting over I have done something wrong.. I have started attending an AD group but only meets once a month, I feel I could go to four different groups once a week is more what I need! She is pretty obstinate about meeting new people as I wanted to get in her something simple in the city senior citizen center but they offer things that would need more mental capacity such as computer courses, jewelry making, line dancing etc.....

Thank you Manyblessings........ it did help to read what you said. I do think earlier this year I came to the relaization (thank you Lord) that this is no longer the mom I knew and I cried. I still do cry and know that I have the promise I will see her again better than ever.

In the mean time it's all the nitty gritty of living You said they are good at hiding and now I wonder if that was what she was doing. All my kids grown and teens at home all say it was time to move her. Maybe I was in disbelief because mom kept saying she was ok and I wanted to believe her. I gently told her once the dr said she has AD and of course she didn't believe him. I don't press it because it doesn't matter. I just told her for my sake that I wasn't hiding her health issues from her.

So now on with life and dealing with each day with her and I am constantly learning what i thought I already had read about AD but now living it. I will take all the prayers and God's sustaining grace for this season in my life.

Thank you