I am the only caregiver for my husband. He sundowns every evening. Some mornings he wakes up with a persistent delusion. He gets terribly anxious and scared if he can't see me. He moves and walks so slowly I feeI like im living life in slow motion. I desperately need some "me time". I tried to leave him here at home with a companion. That escalated his confusion and he felt like he was a prisoner in his own home. That triggered wandering to get free. All our family is distantly far and can't help. Any suggestions?
"Anxious and scared if he can't see me" is called Shadowing and is a common behavior with dementia.
If you can afford an in-home companion, can you afford an Adult Day Care where he goes in the mornings and comes home later in the day? I totally understand your desperation for alone time and self-care so that you don't burn out...
Have you tried starting slowly and telling him the companion aid if for you, not him? Maybe see if you can get a guy? It is possible for him to acclimate to a person, it will just take time. Maybe at first don't leave the house but have the aid engage him in an activity while you have alone time in your home, then eventually he may accept you leaving the premises -- but really do get him on meds if he isn't on any. Call his primary doc about this. It may take a few weeks for med to fully kick in.
My friend's wife with ALZ was paranoid and shadowing, and totally rejected a companion for a while but then eventually got comfortable. The aid had an RN background, so IMO it's important you don't get a newbie who knows nothing about dementia. This is always a disaster. I wish you much success in finding a solution!
They will serve him breakfast, lunch and a snack and have different activities to keep him busy and may have(like most)a spa day where they will give him a shower and even trim his hair and beard if needed.
They do such a wonderful job with the folks that attend. Of course there is a charge, but if money is an issue they do offer financial help, as does the VA if your husband is a veteran.
Even if you can bring him there 2-3 days a week for 8 hours/day, just think of what you could all get done in that time, plus it would keep your husband busy.
It would be a win win for you both.
If you haven't tried to find a male caregiver, see if you can find one, someone who has the same interest as your hubby, such as golf, NASCAR, football, soccer, gardening or great literature? Someone who has a common interest might spark your hubby to be more accepting to having a caregiver or companion.
I am so very sorry. This is such tough stuff and I wish you so much luck.
Many people come to the site looking for answers that will achieve what they want with no-one getting upset. It won’t happen. You need to make decisions about what is workable to improve things, and grit your teeth about the down-side. The only other option is to see if you can last out until your husband is so far gone that he won’t complain – and is that really a good idea for either of you?
Introduce the caregiver as a friend.
The doctor says this person needs to be here, once you are better and can do A, B, C, then this person will not come back.
The insurance requires this person to be here or we will lose your insurance.
I used these types of fibs with my daddy and they worked.
Hard I know but sometimes you have to think outside the box and use whatever YOU think will help.
Anyway, our closest adult daycare program is 20-30 minutes away and does not offer transportation but I hear is a good one and I’m going to try it even though I need my ‘me time’ at home and I don’t relish an hour in the car each day. Next step after that will be a day companion in our home. After that will probably be MC placement.
It’s really important to plan several steps ahead because you never know how quickly their progression will be, then stick with your plans regardless of how upset your husband gets. (I’m speaking to myself here, too.) That includes arranging the financial stuff ASAP. It’s hard though, when hubby has those strangely lucent days and seems almost ‘normal’.
Also, imply they are there for you.
Please don’t let him dictate who can care for him. There is only ONE YOU … and you have wellness needs of your own (both physical and emotional).
Even w a premature infants or pediatric cancer, parents need to take care of themselves and have respite for sustainability.
@AlvaDeer mentions the importance of considering the sustainability — or lack thereof — with your husband’s current care model.
How to expand the bench?
Agree with all of the above:
- In-home caregivers knowledgeable about dementia/cognitive decline AND who share interests with your husband.
- Adult activity programs … some are affiliated with long-term LT care facilities (both assisted living and skilled nursing) that can ease the transition to eventual LT placement
- Continue to monitor and adjust meds … due to frontal lobe diagnosis, ensure you have a Geriatric Psychiatrist or Neurologist on your husband’s care team (if you don’t already). Eventually his medication needs will surpass the skill of a primary care MD.
- Begin to think long-term for both you and your husband. As Alva mentions, now is the time to consult Elder Law attorney for your husband’s needs (HCPOA and Financial POA, Advance Directives, etc) and for YOU (asset protection, etc)
- As PeaseUp mentions, start thinking several steps down the road and have a plan.
- Agree w Margaret McKen, there are no easy answers that will keep everyone happy.
In addition, we have found it immensely helpful for both our mothers’ care to get useful info from consultants that are aware of pro’s and con’s of various residential programs. Your Elder Law attorney will likely have good local contacts.
Be sure that LT residential options have a Geri Psych or Geri Neurologist affiliated w the facility.
For now, we have also found caregiver support groups to be invaluable for both my husband and I for emotional support and to learn more about “real world” tips related to dealing with cognitive decline and the emotional and physical demands of caregiving.
Two books that have been invaluable on our journey:
Being Mortal
My Father’s Brain
Both are written by MDs who have had to deal with their own family members’ cognitive and physical decline.
Last … a sobering statistic, from Stanford research, regarding caregivers who are caring for someone with dementia or cognitive decline in their own home , due to the stress of caregiving, 40% PRE-DECEASE the family member with dementia. Don’t become part of that trend.
TAKE CARE of yourself!
I do this all the time. Sometimes I feel my husband with dementia needs some kind of "reasoning or reassurance" to feel a part of the decision. For his benefit and yours, consider it "therapeutic fibbing" as it eases the guilt feeling that may creep in. Others without experience with dementia can be judgemental because they can't understand it when you say you have to fib to him all the time.
As so many others have suggested, try to get some "me time" in your home at first for the transition. When I first began with a caregiver, I felt like I had to leave the house. Often I ended up wandering aimlessly through Walmart only to get home and wishing I had picked up XYZ adding more frustration to my plate. It was hard in the beginning to let go of the control, if I stayed at home I instinctively tried to help the caregiver.