Transition

ChrisVoorhis

Hi Everyone

I have been actively caring for my wife for 10 years, thats how long she has had Alzheimer’s. We have other friends who come over during the week and help support us during the day but i care for all her drug, food,drink, bathing and medical needs, including Dr visits. We are very close and she depends on me for everything. I cannot get out except to shop because she becomes very upset with me when i am gone, even tho i never leave her alone. I realize this is because of her memory problems and she depends on me. However i also realize this in not healthy for me at all and need to change as she continues to get worse. We have a small apt attached to our house and just moved in a person who is a caretaker to other, part time, who is going to begin working here. THE BIG QUESTION IS—-HOW do i get my wife to let her help us. I want the caregiver to give Carol her meds every am and pm before bed, cook 2x a week and get her started in the morning, which is the most stressful. Also hopefully the caretaker can help me get some free time of my own so i can recover some sanity. I cant go do anything because Carol gets so upset with me when i am gone.(not violent just extremely upset and wont even talk).

Thank you for any comments

Chris

M1

Welcome Chris.  You have clearly done yeoman's work if you've been at this single-handedly for ten years.  

I am not yet as far along as you are, but one of my goals for the year is to start bringing in outside help, and I face the same issues in terms of getting my partner to accept it.  She is not as far along as your wife however.  I suspect you will have to detach a bit emotionally--and I know how hard that is to do---to realize that you need this for your sake, and you must be willing to tolerate some disgruntlement on her part, at least initially.  Hopefully your new caregiver will figure out how to distract your wife and redirect her, and it may go better than you think.  Regardless, it sounds very necessary.

There are many here who have been through this, and I'm sure others will chime in.  Good luck.

SSHarkey

Hello Chris! How you’ve found a “live-in” helper! Bring her into your everyday life as much as possible as a new “friend” until your wife becomes accustomed to her. She will probably adapt more quickly with you there together initially. Then you can slowly wean yourself from her sight. Small time periods at first then build it up. I did that with my mother and it worked wonderfully. 

ChrisVoorhis

Thank you for your reply. I tried this method for the last year with a professional caregiver. They are friends, but if i leave its the same issue all over again. One year later and i still cant leave, she is holding on to me and is really upset that i might die when i go out. I understand this but still must overcome it somehow. 

Chris

sandwichone123

Chris, you can't keep her happy all the time. Do what needs to be done and let her get used to it. Without *you* the whole system falls apart, so your primary concern needs to be taking care of *you.* She will get used to a caregiver if that becomes the normal pattern, but there will be a transitional time when it's a change, which will be uncomfortable for everyone. Life will be better for everyone if  you can work through that discomfort. That's also what people have to do whenever a care situation changes--it takes time for it to seem normal for the pwd.

Ed1937

I agree with sandwichone. It has to be all about YOU now. You can't go on like this forever, and if you try, she'll be here but you won't.

Gig Harbor

I have read a lot on various sites and what comes across is that it is horrible for the person with the disease and we must do everything to keep them as happy as possible because of this. This is completely wrong and unrealistic. The PWD often forgets they have anything wrong with them but the healthy person lives with that knowledge every hour of the day. In trying to make one person happy 100 % of the time the carer truly suffers. No one is happy all the time and everyone deserves some happiness each day. If your wife gets mad that is OK. If she doesn’t talk to you for awhile that is OK. Eventually she will get used to you leaving for periods of time. It is better to prepare her in small doses. That way if you ever have to be away from her due to a hospitalization (yours) she would be used to it and it wouldn’t be traumatic. Don’t ever feel guilty for caring for yourself.

Jeff86

You have been on this road a long time, Chris.  Welcome to the forum.

Sounds like your wife experiences anxiety when you are absent.  Are there other times when she experiences anxiety?  It’s not uncommon, of course, for PWD’s, and to the extent it causes your DW distress you might consider speaking with her neurologist about treating it medically. Not infrequently, geriatric psychiatrists and neurologists prescribe anti-psychotics for anxiety, notwithstanding black box warnings about risks to older patients with dementia.

Anxiety was an issue for my DW for a few years, and olanzapine (generic Zyprexa) helped.  (It may, however, have some longer term side effects that should be monitored.)

NylaBlue

Hi Chris,

I know where you’re coming from, my husband says he “misses” me when I go into the kitchen (within eye sight) and warns me to be careful when I take out the trash or go to the bathroom. Nonetheless, I enrolled him in a day program over three years ago because I had to have some time to myself. He was unhappy at first, but I kept convincing him to go “just one more time” until it became a routine. For my own sanity I couldn’t give up. I know you have a different situation, this is just an example. The point is, don’t give up on getting your wife used to the new normal. It’s for her own good too, even though she doesn’t know it.

You mentioned you can only get out to go shopping. Since your wife accepts that you must go shopping, could you stay out longer or “shop” more often? To back up your story, you could bring home one or two items each time you go out.  Or you could tell her your doctor has prescribed twice weekly physical therapy for your (new) back problem. Patients can’t bring family members along due to COVID restrictions. 

ChrisVoorhis

Dear Jeff86

Yes she does experience anxiety at other times and her Dr is treating her with Quetiepine 25mg as needed to calm her. She uses it for sleep mostly at night and i have “occasionally used it during day, it kind of sedates her tho. She is on other anti anxiety drugs so i  guess this is the best one for her?

ChrisVoorhis

My wife has had some recent issues with her colon early am. Soon as she eats breakfast(whatever it is) she has cramping in her colon and it sends her to the bathroom for 15 min. I give her a loperamide and it calm her down in about 45 min but makes her very tired from the ordeal. Usually only happens at first meal then she eats a little at 2-3. Then dinner at 6 and usually doesnt have issues again til the next breakfast. Tried everything, no early pills till after she eats, no cold drink in am, etc. nothing seems to help much. She has been on memantine 10 mg twice daily and rivastigmine patch 4.5 mg for 7 years and wondering if these are the culprit. All this started about 3 months ago. So dont understand why these meds would be causing this now and not this bad before? Help any thoughts

Jeff86

ChrisVoorhis wrote:

Dear Jeff86

Yes she does experience anxiety at other times and her Dr is treating her with Quetiepine 25mg as needed to calm her. She uses it for sleep mostly at night and i have “occasionally used it during day, it kind of sedates her tho. She is on other anti anxiety drugs so i  guess this is the best one for her?

Meds for PWD’s are often a trial-and-error process.  What works for one patient may not work for another.  If your DW has an Rx to manage anxiety but continues to experience it, I might suggest talking to her doctor about trying something else.

Paris20

I cannot go anywhere without my husband calling out to me. He needs to know where I am at all times. That includes the bathroom. A caregiver now lives with us but DH refuses to allow her to do anything for him. One time she tried to help him navigate our steps and while pushing her away, he pulled her down the steps with him in a scary tumble. It was a miracle no one was seriously hurt.

I leave the house rarely these days. When I do, DH constantly asks the aide where I am and when I’m going to return. He paces, grits his teeth, and becomes agitated. He opens and closes doors, or stands near doors, hoping to find me. The aide now handles everything except direct physical care of my husband, which he will not permit. So, she cooks, does light cleaning, helps with the dog, does all laundry, and sets up medications. It’s worth it for me not to have those responsibilities anymore. Maybe as his condition deteriorates, he’ll no longer care about the aide doing her job. Bottom line…do whatever works.