My husband of 54 years and I grew up together. We have two children that are both living out of town along with six grand-
children. We had saved and planned for retirement like most couples but the year my husband turned 66 he was diagnosed with dementia. He had been having memory problems and personality changes. There was anger where he had always been so easy going. I had also retired and stayed home becoming his caretaker. At first, it wasn’t too confining but slowly began to get worse. He started forgetting how to get to where he needed to go. He had problems pumping gas and using a credit card. He couldn’t change my flat tire. He was having problems with the simplest issues. He was still mowing the yard and doing a good job and he needed to stay busy or he would get irritated. He would mow sometimes even if it didn’t need it. As time passed he became more and more dependent on me. I read all I could about the disease knowing that I needed to be patient and understanding because it wasn’t him who was yelling at me. He would just change. I didn’t realize I was probably causing some of his anger. I had to learn how to say the words differently in a different way. Sometimes I didn’t make it. I truly need a break; I realize that now. It’s been he and I 24/7 now for six years and I don’t know if he’ll be ok while I’m away. He tells me he doesn’t think he can make it without me, he loves me over and over all day. Our (kids) are really too busy to take him so I can have a few days. I don’t feel they think it's that important or they understand the hardship a caregiver sees. Is there any suggestions for me short of being admitted to a “Resort for burned-out caregivers”. My husband would never stand for a stranger to come into our home to stay with him. He doesn’t talk about his dementia at all unless I bring it up. He doesn’t have any old friends he knows anymore that would stay occasionally. It’s strange how your friends go away when you get dementia but I do know they don’t understand how he’s going to react toward them. I am at a loss what to do at this stage of the disease. I plan on taking care of him for as long as I am physically/mentally able. He would do that for me.
You can only give so much and it will effect your health. Then what is in place to care for him when you are in a hospital?
He is dependent on you and so it will be hard to shift care to others sharing the load. Research available day cares or in home care and you will have to say " i have a gynecologists' appt ( no you can't come) that I have to go to so this person is here to watch the house..bye"
Are there any men's groups or hobby groups he would go to? Would a friend take him to a movie every few weeks?
He talks nightly in his sleep. Our daughter heard him last night telling someone how to shoot specific types of guns. Scared her to death. This has me concerned since he refuses to tell anyone where the keys to the gun safes are. I've got to find out how I can get him to turn over the keys so I can at least put an additional trigger lock on his guns to keep us all safe. His neurologist just says "he's acting out his dreams", well what's going to happen when he really does act out his dreams?
I've reached the point that he's going to be placed in adult daycare a few days weekly after New Year. He's a 20-year veteran so on one of the days he's in daycare I'll go to the VA and see what services they will provide. Our daughter does live with us and she does take him out at times whether it's shopping - really gotta watch what goes in the cart, it's like having a kid with you.
I've found my temper runs short at times more often than not many days. I have my own health problems and it's difficult on some days to care for him without losing my temper.
I take him to a well-known Memory Care Facility for Alzheimer's in Las Vegas. I've lately wondered what happened to their social workers. Now I'm wondering why his provider hasn't sent me their way. The adult daycare I came up with. The VA I read on this forum. That's just 2 ways I'm trying to get some time for myself, whether it's time to go out, stay home and sew or go to a sewing class, I know now he's going to be cared for, not drive our daughter crazy either. We both need our time away from the stress. You do too.
He was hospitalized a few months ago. At that time I also noticed his memory going downhill. It's continuing to fail faster than I realized it could. Fortunately, we had a Trust in place with all of the proper full POA when the time came. No matter what I asked his doctors wouldn't talk to me. I pulled out the POA and presented it to the VA facility he was in. That also placed it in his outpatient records also. Now when I take him to his cardiologist there he'll talk more readily to me and let me make some decisions on his behalf. You don't want to have to go to court or have his doctors certify him incompetent. I know I didn't. One problem was avoided. Avoid the problem for yourself and speak with an attorney who is trained in elder law about how you can do this. Tell your children what you're doing, and tell them that caring for their father is too much for one person 24/7. As soon as you tell them about the full POA they'll probably come around or start asking what is really going on with dad.
My husband has been in an Adult family home almost 2 years and the caregivers there are his family. His dog and I remain loyal and visit even though he doesn't know us.
Here's the latest revelation I had.
In planning 'tips' for his family of caregivers, I asked the manager how many to plan for....well, it takes 9 people to give him the 24/7 care(yes, there are 4 others in the home who also are cared for)...so who the heck did I think I was to be able to provide the daily care that these NINE people provide??? It makes all the difference in the world that the staff goes home at the end of shifts...my husband deserves care from someone who hasn't lost patience.
(The last two months he was at home, I was screaming at him more than anything else....he did not deserve that and I could not stop)
Blessings to all you, whether you are 24/7 or have extra hands(and hearts) in caring for your LO. Please take care of yourselves first so you CAN make the decisions ahead.
Strangers, caregivers will be needed sooner or later.
Your husband is in no position to dictate that, you are in control.
you cannot do this alone. Build a team with whatever professional care you can get and also family, friends, neighbor, church members….accepting help can be hard but there are people who can help. We all feel good when we help others so let others get that good feeling.
And keep some time for yourself and maintain friendships.
You really should have one of them (at least) know how Dad works on a day to day basis - no matter what stage his dementia. If they are familiar, and at ease, with him they will be able to handle your hospitalization better.
You deserve time away from the stress you’re living under. Tell them the time has come.
You make it sound easy to enlist help. If you get volunteer help, they will want to do it at their convenience and your spouse (if they are like mine) won't accept just anyone to care for them. People (including your children) have their own problems to handle, and their families aren't as concerned with a demented in-law as you expect them to be. Children sometimes don't really feel the obligation you wish they did, especially when they get old themselves!
If they come out and say they won't do caregiving, then your options will revolve around what you can afford: In home care or a respite placement for a few days. If there is money, hire some people to come in and help you around the house prior to actually being gone for several days. He can be introduced to the new person and have some time to be familiar with them.
Have a frank conversation with family . Consider, what would happen to him if you get I'll ? Making hard decisions now is in both of your interests and safety and we'll being.
I would look into options for short term respite with the idea that this may turn into a long term placement. And maybe that’s the safest choice for both of your well-being.
The situation will only progress, please explore placement options and if possible, get a consult with an elder law attorney so you play your cards right financially.
Sending support. 😘
While making small-step change, you may take a break and meet/talk with others to plan a long-term arrangement.
You deserve and desperately need a break. See if your children will step in. Work on persuading them, Emphasise that this is what their Dad would like. Good wishes for your future. You have done so well to get this far.
Spot on, never to understand why people equate the two.
Plan independently of relatives or "old friends." If any of them stop by, that's a nice extra, but it cannot be the Basic Plan. Investigate resources available in your area so you know what your options are. Ask the Alzheimer's Association for ideas and resources. They are very helpful for all areas of Dementia and Dementia Care.
She journaled her experience and realized her notes were of help to some of her patients in similar situations. She wrote a book, "Surfing the Waves of Alzheimer's - Principals of Caregiving That Kept Me Afloat". And, has a website, www.reneeharmon.com. The struggle to care for loved ones with declining mental and physical capabilities is no respecter of persons! Take all of the wonderful suggestions you find here and everywhere and begin trying them out. You will find somethings that helps, but help you must find if you want to continue on. God Bless!
My parents and husband's aunt balked over strangers in their house too. We start saying the caregiver was there for housekeeping, cooking and laundry. Over time they adored their caregivers and became comfortable with the duties changing.
Explain to husband you need help so you can care for him. If the stress robs your health where will he end up?
Yes, you need help and breaks. You have a life too. Running errands and going to church can cover a lot of time away to maybe reconnect with friends.
Trazodone helped my dear husband get over the agitation and sundowning symptoms.
I have learned, on this forum that I MUST refuse to take him home or even take responsibility. If the hospital can put him in your car, they will be washing their hands of the crisis. Always remember, "NO" is a complete sentence.
As someone else here said, it’s not about you deserving a break…you must take breaks. Caregiving is one of the hardest jobs, and even the most hardy, even keeled, saint of a person can experience burnout. You need breaks.
You already know what a battle this disease brings, You stated your husband won’t tolerate strangers in the house. The thing is, he doesn’t call the shots anymore. So either have one of your kids give their mother a break and come take care of their father or hire a caregiver to come into your home. You may want to be there for the first visits of a caretaker, to ease his discomfort. It also may take finding the right caregiver, perhaps a male.
We have a men’s organization who is filled with middle aged men who will come for free to spend some time with dementia people. In our area, it’s the Knights of Columbus. However I’m sure there are other groups and organizations and church groups who will do this.
It’s a matter of finding the right match for your husband, so he will feel it’s a treat to have a visitor. This may take some time to find the right match, so I’d really ask if one of your kids can come for a visit, while you go visiting elsewhere.
I do know what it’s like 24/7 to just be you two. That’s where we are now. My husband has had dementia for more than a yr now, MCI for almost 2 yrs prior. He has trouble with the simplest of tasks. But as I said, we are still early, and I don’t feel bad burnout yet. I do belong to 3 online caregiver groups and I did have to start an antidepressant. All help some.
Dementia people rarely talk about their dementia. And you aren’t supposed to remind them of it either, because all it does is make them feel bad or more confused.
I know it’s a matter of time when I cannot take care of my husband. I won’t be able to lift him or anything. I’ll need to hire help because I won’t have any choice. I’d prefer not to move him into a facility, but again, I may not have a choice. We are totally alone, with no kids or family.
Find the right help for both of your sakes. Good luck! Keep us posted.
Perhaps, most important, is that you face that you may not be able to permanently care for him, for lots of reason. The most risky is that you become suddenly disabled. Putting off getting some help increases the odds of this happening. Please, investigate resources, become familiar with costs and your finances. Consult an elder care lawyer to go over your possible scenarios. Talk straight to your kids who could be left with this situation while being mostly ignorant of the facts. I think time for an emergency family meeting.Ask them to spend a little time "discussing" planning with their father. A counselor might be a blessing to help with this meeting, there are social workers adept at these problems. They can explain to all what is happening and why the status quo no longer works. You are understandably putting off a difficult future, but it will only become more difficult by doing so. You can present this all as your problem that you need help to handle, that is the case. It isn't pointing the finger at your husband and saying "It's your dementia." It is a change in the situation that requires the family's and professional help for everyone's well being.
When the going gets rough, you find out who your friends really are and aren’t. That includes your children. Everyone is there for the good times. Few are there for the bad times. Make a second list, people you could trust to stay with and care for your husband for 3 hour periods of time. Contact people on the list to see if they would step in to give you s break. That includes your children. Don’t expect a lot of takers.
If someone does step up, schedule them for a three hour slot. Have those slots in mind before you make the ask. If they can take him out, great. If they can’t, get things ready for them. Find checkers, playing cards, the TV remote, prepare an “easy” meal or snacks to have available. Make this “babysitter ready” for them to set them up for success so they don’t have to necessarily figure out the entertainment program if nothing is working. When you return don’t flash them your fancy new manicure (even if that simple treatment felt like a lifeline) or they won’t ever return.
If there are no takers, hire a CNA to come in or take him to a daytime adult daycare program. Review expectations with tge CNA so the session is therapeutic for your husband. A CNA used to come to help my dad with workouts and a shower, which was very helpful for both dad and me. They developed a close friendship and enjoyed the time together.
Another alternative is to find another woman similarly situated who might be a compatible friend for your husband spend some time together as a group of four and it it seems to be working out, take turns letting your husbands spend time together with one of you on a break.
If your husband needs more care than you can handle, there is no shame in hiring help for more hours or finding a suitable nursing home. You need a sustainsble solution. You can spend as much or as little time there visiting (as much as you care to) without shouldering the responsibility of his safety and personal care. Your kids cannot grumble, you let them know you needed help.
Send emails and pictures of themselves (and their families?) daily. Send old family photos of themselves with you and Dad. Repetition is good, not bad. When Dad says "He sent that same picture a few days ago," you will both appreciate that he remembered it.
Tell them you need them to visit regularly. If they live nearby (< an hour) tell them you expect and need weekly visits. This is for you not just Dad. You need their hugs and attention. Stupid as it sounds, they can be jealous that Dad gets all of your attention, and their families get none. If they live further away ask for monthly visits. Tell them you need their help. Don't just ask them if they have time. You have more than one child, so they can rotate weekend visits on a regular schedule.
Have a family meeting, on Zoom if necessary, to make sure they all know what to expect going forward. Do this monthly. Discuss the possible logistical and legal issues, such as what happens to Dad if you become ill or incapacitated. You need a family plan that you can count on long term, and they need to understand that roles have reversed: as children you took care of them and were responsible for their wellbeing. Now they must be ready and able to help take care of you. If they don't know how, recommend that they find resources to learn. This isn't just about your needs now. All of us will eventually need to care for another person and it is a requirement of a mature adult to be able to do so.