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Al_Butch · July 27

I'm a full time caregiver to my wife. She has good days and bad. She recently had a knee replacement which actually has gone pretty well. She's doing a great job recovering from that. My main concern is my sanity and health. Her Alzheimer's is really progressing and I'm having a hard time diverting her "discussions" which usually are just incoherent talking about nothing and trying to explain what she "needs" to do. I'm also having a difficult time with the wanting to go home talk. I try the suggestions I find on the internet, but they don't seem to help. I could use some suggestions on how to divert her attention. Many times we just watch TV and she starts to think that the characters on the program need things from her. She doesn't have any hobbies to divert her attention. Before her diagnosis our main hobbies were outdoor activities such as kayaking, bird watching, tubing, etc. which she can't do at this point. I sometimes get angry and I hate that feeling. I have care givers come in 5 times a week, but they have been hit or miss. Some of them are great and can handle her and relate to her. Others just clean the house and do nothing as far as personnel care. This has led to me sitting at home instead of getting any me time.

April23 · July 27

Welcome. There are respite programs where your wife could stay overnight at a facility while you have some time alone if you think she could handle it. They are usually offered at nursing homes or CCRC facilities. Also I would contact your local agency on aging for adult daycare type programs she could attend. I found a local in-person support group on this forum which can provide you an outlet as well as help with local resources. You absolutely have to take care of yourself, caregiver burnout is real and you will be unable to properly care for her without caring for yourself first.

Can she “help” with anything around the house? Fold laundry, set the table, water plants, etc.? What about a drive in the car, feeding ducks at a pond, a walk at a park (once she recovers)? She doesn’t want to go home, she wants the feeling of safety and security that home provides. The disease is robbing her of that.

There is a forum here for spousal caregivers as well. If you haven’t read the book The 36 Hour Day, it’s a good one for caregivers. Visit often, this is a great place to be when you need an outlet.

SusanB-dil · July 27

I agree with April23, do check any local aging resources. Also look into adult daycare near you for maybe a couple days a week. We called it the community center. While she is there, definitely do something for you, whether it be just a cup of coffee or a walk at the park.

Al_Butch · July 30

https://alzconnected.org/discussion/comment/278441#Comment_278441

Thanks for the information. I appreciate the response. I'm going to look into adult day services in my area. However, much of that cost money which I don't have. My money mainly goes to care givers when I can. I'm thinking that the adult day services might be cheaper in the long run, so again thank you for that suggestion. She can't really "help" with anything at this stage of her Alzheimer's. Right now her knee surgery has limited her outside activities but she's getting better and that may increase soon.

I barely have time to myself than to read. And frankly unless the book comes with money I can't see how it will help. I ordered it so hopefully it can provide some information.

My biggest issue is that all these suggestions from people and this site is to look up certain organizations. I literally have 15 minutes or less to talk to someone before my wife wants to get up and see what's going on. She can be a fall risk so I'm at a loss. And frankly when someone comes in to help I really don't want to spend that time on the phone when the next day I don't have any help at all.

Even now, I'm writing this and most of my posts after she has gone to sleep. But my anxiety is still high as I watch her with a night camera tossing and turning.

ARIL · July 30

The Alzheimer’s Association 24/7 helpline may be your best bet right now:

https://www.alz.org/help-support/resources/helpline

So sorry you and your wife are dealing with this.

H1235 · July 30

You might want to call your local commission on aging. They they are usually a great resource.

Victoriaredux · August 4

You may have to change her TV viewing to nature shows- cable or streaming , the gentle ones so that the storylines don't upset her or cause nightmares. You can watch them too or use a tablet to watch plotline shows. Her hobbies are nature so she may like that.

I'm glad she's able to keep up with the knee exercises for recovery, many PWD can't remember the exercises or are too apathetic to care.

[If you haven't already hope you've done the legal things and as a backup have researched MC in case she needs a sudden placement , respite stays may give you idea which ones you' d like if needed. Many have wait lists so getting her on the list may be a good idea, easier to say pass but keep her on it than need a bed and be told its months. An elder law attorney can explain medicaid and how it works in your state. There are programs to help with in home - varies by area and state . Agency care is the most expensive and as you've found it varies. You need to grab every benefit you can so you will have finances for yourself too.

Finally, sad truth, many caregivers don't outlast their LO, you are her love and protector. Taking care of you is on her list of must haves . Try the day care , respite - see what gives you a break. It's not "normal" to be under the 24/7/365 lonely stress of caregiving a PWD . She's fortunate to have you.

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