Respite Care(10)

Pipaw

In two weeks, I have respite care scheduled to begin coming to our home for 4 hours once a week. That may increase to twice a week, but I’m sorta going to break the ice to see how this goes. I guess I’m somewhat pessimistic. Let me explain: Presently when a friend comes to visit my wife (diagnosed with Alzheimer’s) she enjoys the visits, but after they are gone, I hear, “Did you put them up to coming here? You go places right now and I stay here alone.” My wife and I had this conversation last night that doctors advise me to get some downtime. If I get into specifics, it makes her feel bad. My daughter, who is a RN tells me to keep my answers simple. I fear that the roof is going to blow off when this respite care person comes or after they come and go, then I have to hear nothing but arguments. Yes, I need a break. What’s some of your thoughts? It’s easy to give advise from the outside looking in, but living with this aftermath is hard. Thank you for your words of encouragement.

Pipaw

David J

I have had respite care come in and be with DW while I went elsewhere to relax, do errands, or worked upstairs in my office, or worked outside.  It started October 2019, was interrupted from March to June 2020 for Covid safety, then our aide was in an auto accident in December. I’ll tell you my experience, but yours may differ. 

When awake, my DW is my shadow. I can’t go anywhere or do anything without her by my side. She relies on me for everything. Introducing the aide and getting DW to accept her took several weeks. When I left the house there was a scene about 50% of the time. It worked best if I snuck out when she wasn’t looking. When we started, I had the aide for two afternoons per week for three hours. After the Covid break, we cut back to two hours per visit, because DW got very difficult after two hours. The aide tried hard to entertain her, and ended up using the time to prepare baked goods or sometimes dinner items for me to reheat. I sometimes thought it was just more work for me, needing to line up something for the aide to bake or cook while I was gone.  

Sometimes, DW was very difficult with the aide:  swearing, yelling, telling her to shut up or go away, etc. The aide was extremely patient with DW partly because that is her nature, and because she is trained to deal with this sort of behavior.  I felt I could get out of the house and not worry about what was going on at home. 

 Fast forward to January 2021, and I have been without the side for 5 weeks.  I have had no respite and it shows.  I am exhausted physically and emotionally, the house is a wreck, I have unfinished chores hanging over me, and I have to take DW everywhere I go. In the year+ We have had the aide, DW’s dementia has worsened and that had meant more work and attention from me.  I am having a difficult time without an aide, and hoping for a speedy recovery of ours.  

We all need a break from caregiving and have to figure put what works best for us and our LO. I hope you can find what works for you. 

Joe C.

Pipaw, Following is my experience with a hiring a caregiver. DW started showing signs of dementia 7+ years ago. About 4 years ago I was still working and she was having trouble preparing meals and if I prepared meals ahead often she would forget to eat. I suggested that we hire someone and she was vehemently opposed to the idea. A little over 3 years ago I had to have surgery and I told my wife that the doctor wanted me to have a nurse’s aid come in to help me recover (that was a fiblet). Since the help was for me she was OK with it. The agency/aid were aware of the ruse and played along. In a short period of time DW bonded with the aid and she has been with us ever since. Maybe if you can convince wife that that the aid is there to help you she will be more open to the idea.

French

We begin to have an aid very early in the AD because I was working and he was boring and also because I wasn’t quiet when I needed to be at the office.

When I asked him he couldn’t understand why an aid as everything is fine for him and he has no difficulty. I contacted  an association specialized in respite, they are called « your second breath » and provide home aids. The director came and she explained him (not me) what her association was proposing. And the answer was, yes we can try. 

My partner is easy, but I learnt that everything is always easier when proposed by somebody else, and best by someone it is the job !

This aid come twice a week and they go out together, play guitar, cook, listen music...

Now the next step is having somebody some mornings for shower and dressing when I will have to leave early. Not sure it will be so easy. And I learnt that the previous association just provide Aid for social relationships but not personal assistance... so I have to search another !

DWck

I recently restarted an aide to come stay with DH for 4 heavenly hours a week. When I previously told him that she was coming he got angry and said, “no, no, no, I don't want her”. I changed the subject and when she arrived he was Mr. friendly. The palliative care nurse suggested that I don’t tell him ahead of time that she’s coming. I tried it this week and it worked great. You need the respite!

Nonna24

I don’t know if this will help but I just got my husband in with hospice. The services that they provide are amazing with no out of pocket costs. Now I do believe they may have to be in advance stage but I may be wrong. I have a nurse that comes out twice a week and an aide that comes twice a week to bathe him, shave him, get him dressed ect. We also have a social worker that will come out every two weeks. She is presently getting me hooked up with one of their volunteers that will come out weekly for daycare so that I can get out and do whatever is needed. They have already provided me a walker for him and a small wheelchair for when he is not able to walk safely. They also offer respite care that Medicare will cover for up to five nights at a time at a nursing home that they are contracted with. If you are unable to get them there on your own, they will provide ambulance service to get them there. You can use respite any time you feel you need it. They take care of everything themselves. You just tell them what you are in need of. Honestly I feel like a cement block has been removed off of me   I’m not sure it is like this in every state but we live in VA and this is what they offer here!!!  I feel my prayers have been answered. This is an extremely hard journey as a caregiver and no one can do it alone!!!!!

Ed1937

I've heard of others suggesting what Joe said above. They just seem to be much more receptive to someone helping the spouse than they are to accept it for themselves.