Stabbed in the heart….😞

Sunrise24

My dh has been in memory care for almost 2 years. Today I picked him up and met friends for breakfast and went to visit his sister and niece afterwards. Brought him home and basically had a good day sitting on deck and cooking dinner. He said “ should we leave early “?, meaning going back to mc… he thinks he works there. When I dropped him off, I sat with him for a while and noticed he was not talking but just staring straight ahead. I asked what was wrong and he said “you have to ask”? He said he didn’t think our marriage was that bad that I was living in one place and I ship him off somewhere else. I told him that it was where his doctor wanted him right now and he made a comment about it being bs…. He said , you must be very busy and wouldn’t kiss me goodbye…. I cried all the way home. I have been struggling for so long with whether or not to care for him at home full time but just don’t think I can do it.. He has difficulty walking and if he fell, I don’t think I could pick him up… We had a really good day and I feel horrible because most of the people at the mc are non verbal and he really has no one to talk to except staff and they are out straight ….just need to vent ….. I know I can’t ask if I am doing right or wrong but I am riddled with guilt and sadness and don’t know if what I am doing is the best….. sorry for rambling……

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Sunrise24

Victoria2020– Thank you for your response… I appreciate that you can put it all in perspective for me in ways that I am often unable to do on my own….there is not much available for day programs which is one reason I try to do more with him. It may just be watching a movie at the facility or going for an ice cream.. Maybe bringing him to the house is not a great idea but he always seems so happy and peaceful here then after a few hours he might say, “okay we should probably go”…… such a roller coaster and not in a fun way…… Thank you for your support!!

tucson anne

I think there is a problem with what is available for residential care. There are many people with dementia who would do well in a residential setting with differing levels of cognitive impairment. I believe in other countries there is a mix of assisted living and dementia care. I toured a very nice memory care community in my town and asked if there were differing levels of functioning in the memory care group and was told there were two"high functioning" clients. It would just be the luck of the draw whether you found a place with more. And yet putting an Alzheimer's patient in assisted living won't work well as the passivity of the disease means they would just sit in their rooms alone. We need rethought communities!

Sunrise24

Tucson Anne… totally agree!!!

jfkoc

i was able to take care of my husband at home until he died. Granted the last year additional hands were needed.

If you want your husband home with you please do not let not being able to get him up off the floor a reason not to have him with you.

My husband had his share of falls and some required the help of some wonderful firemen. They are more than willing to come to your rescue.

ButterflyWings

Ditto what jfkoc said about help if your DH is a fall risk. Firefighters assists have been our lifeline more than once. And they said "no worries, this is our job. Call us anytime." And..."you're taking good care of him, ma'am" - an unsolicited professional observation which really made my day the last time they had to pick him off the floor and put him in the bed after a sudden fall which he would not, or could not get up from (which scared the bejeezus out of me and made me feel horrible, but hasn't happened again in at least a year).

Otherwise it seems like if you are bringing him "home" to your house for visits, that is likely triggering and not a good idea anymore. I'm sorry you both were sad after such a good day.

Young@heart

Sunrise, are you able to afford one of the home care agencies (mine is $40.00/hr)? Perhaps a companion that would visit one or two times weekly would provide some stimulation and just plain human contact for your dh. If he would question such visits, (my husband-who is still at home refused for a very long time) you could tell him they are just a volunteer that stops by to spend time with residents. You could still visit him but maybe it would help ease your spirit a bit.

Kibbee

My DH has a progressing neuro-cognitive disorder. Over time he has had increasing problems with coordination, balance and lessening strength, which resulted in multiple falls. Initially I was able to get him up by myself but as he became weaker and his legs began to lose weight bearing capacity this became more difficult. I asked his neurologist to write an order for a Hoyer Lift and a hospital bed, which were covered by Medicare. The Hoyer Lift has been a game changer. I can easily operate it by myself. I use it for transfers from bed to wheelchair and back. It can also be used to lift him from the floor if he falls. Having the Hoyer Lift and knowing I can do these things on my own has greatly reduced my stress level related to falls and maneuvering him around. At this point, the Hoyer Lift is the main tool that is making it possible to continue to care for him at home.

Sunrise24

Thank you all for your feedback….! You have provided me with a lot of useful insight and information….. Young@heart: I wish I could afford to have someone visit with him but I am currently spending $9000 a month for his placement and funds are rapidly depleting…. I am working part time to keep myself afloat…. So thankful that you are all available and willing to share your thoughts…..💕

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Sunrise24

Thanks Victoria 2020…. I have had an attorney… can’t shelter assets at this point…. I am trying to avoid Medicaid at all costs… We have a Veteran’s Home in the area that I have applied for. It is a long term care facility … Application has been in for about 8 months so far… a long list to get in but hopefully before year ends!!