How did you know, it is time for him to move?
Hello everyone, I am new here. My DH has been diagnosed with Alz almost two years back. It is being quite a journey. His cognition has declined considerable since then. I feel quite lost. I have tried to take care of him by myself this whole time. It is just the two of us. My family does not live in the country. He has family living in the same city but they have been completely out of the picture. Now I feel I have reached the limit where I can take care of him. He demands more attention. At the point I cant leave him alone in a room in the house, so I can take a shower. He gets anxious and angry. I can't go almost anywhere with him, because anything I say triggers a verbal aggression or starts falsely accusing me of mistreating him in front of other people. I tried to hire companionship, so I could go to work. Last time, I had to come back earlier because he had a violent verbal reaction towards her because he wanted her to leave. When I got home this poor woman was crying and scared because of his reaction. The same happens with friends. So lot of friends do not stop by anymore. It started to feel like I am his prisoner. My mental health was good until recently that I started to show symptoms of stress. Now, I am starting to consider the possibility that it is time for him to move to a memory care facility. I feel so distress with the thought of getting him out of the house. I can't stop thinking what's going to happen with him, will he be well taken care? will be feel alone? will be feel abandoned? and then it comes the guilt. How can I make the right decision? I know that there is not a straight answer, but it would help to know about your experiences. Thank you very much for reading.
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I recently read the number one thing that caregivers feel is grief. My DH is three years in with ALZ and is firmly into the middle phase. He's had horrific hallucinations, paranoia and been extremely agitated. We tried an anti psychotic which did not work, then got him on a PTSD drug that stops nightmares and it worked. The feeling of guilt you feel for wanting it to just stop, to not be afraid, thinking about putting them in memory care I think is common. I know I feel that way. It's a roller coaster of guilt, grief and heartbreak. There are a few funny sweet moments that occur and then off we go again. Every time I go to church I can't help but cry. It just comes out. It's embarrassing. Lol. I just joined this support group today. Last week, for me, it was "I need help and support now". So I hope this helps you to know you're not alone and maybe another person on here can help with some advice. Hugs
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Hello dilanstipe,
Welcome. Glad you found this group of people. I am also new here. Just reading the posts gives me some relief and guidance.
I think you answered your own question. If your ability to provide care is suffering and your own health is suffering, it seems something different could be healthier for both of you.
The guilt and wondering about LO'S care out of the home is debilitating in itself.
We are looking for a place that feels right for my LO and nothing feels right from my point of view and the move must happen.
I've taken some solace from a person who posted here that moving to a care residence is not something happening to our LO'S, but FOR our loved ones.
Still, all the decisions, fears and concerns are valid and scary.
Building relationships with the people who will be care providers is my focus as soon as a place is decided upon.
Best of wishes to you and yours as you navigate these turbulent vulnerable circumstances.
Again, welcome. Stay connected here, it helps me to not feel alone.
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It's so hard! Yes, I think finding a placement should be a priority. Even if you are able to get his symptoms under control with medications, you should always know what the plan is if he needs placement suddenly. For me, when the choice came that I could either work or care for him, I placed him in a facility. Either way he would have been unhappy (because without my income we couldn't have done the things he wanted to do) but my work is productive and fulfilling but I would hate being a full-time caregiver.
Now, when I go see him and take him fun places, I have the energy and focus to enjoy him and he enjoys the break. Within a couple of hours he is tired and I take him back to his home, where he feels stable and likes most of the people. :-)
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It seems that you should consider placement if not for anything else but your safety. His agression could be turned physically toward you and we don't want that to happen.
My DW is very agitated and agressive in the mornings and at times through the day. I'm seriously considering placement in the next few months, mostly for her safety and to have better care than I provide now.
It's a very difficult decision for me as I know the transition will be very difficult. She will be lost and not be able to find her way to her room without help. She will cry and act out when she's scared but I will have to be able to trust the staff that they know what they are doing and can handle her without me.
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You feel like you are his prisoner because you ARE his prisoner. The 24/7 of caregiving messes with your perception to the point that you are normalizing your life with your LO.
I see so many people here who have lost all perspective of how a normal life should be because they are stressed, sleep deprived + exhausted. Please understand that YOUR life is at least as important as the life of your LO.
Placement of your LO is not irreversible. If it does not work out, you can always bring him home again. My recommendation is to place your LO. If may take some weeks for him to settle in but it is usually much shorter than that. Believe me, the transition is likely to be much harder on you than it is on him.
Once you have the pressure off, you will be able to recognize how placement is positive for both of you.
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If it helps at all... I've gone through the full cycle of emotions in this journey, and the emotions rage on even after placement. As difficult as it was to deal with the guilt surrounding placement, I knew and still know that it was the right decision for us, and hence, never looked back. Please understand that placement of your LO is not abandoning him/her. It's the ultimate care you are providing your LO through professionals who are trained to provide care to dementia patients and are acting on your behalf. Of course, we'd feel that we alone are the best caregivers for our LOs. However, when it reaches a point where your health and safety are at stake, you'll know what's best for you and your LO. Finding the right MCF is the key. My DH and I are very fortunate to have found an exceptional MCF with compassionate, caring and kind caregivers--from (local) owners and management to staff. Once we found the right mix of medications, DH is doing very well at the moment. In fact, he's much better than before placement. The owner/administrator was instrumental in convincing DH's neurologist to add a medication to DH's regimen. So far, we've seen a marked improvement overall. And I am getting myself back on track to regain my health, too.
As I and many others have said before, do not let this disease take both lives.
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Ditto to everything that others have posted. My DW went into a geriatric psychiatric facility back in October due to extreme paranoia and agitation. She was there two weeks and it was clear that she needed more care than I could give. Upon discharge she went into a MCF. Thanks to a good meds regimen and the excellent care she is receiving, she is doing well. I see her 4-5 times a week and am in close contact with the MCF. She no longer lives in fear and anxiety. Her first few weeks in the MCF were difficult, but she has now settled in and we are both much better off. She has EOAD and I had retired early to be her full time caregiver. As of January 1 I am going back to work part-time, which is good for me emotionally and financially, since MC is expensive. I think most of us experience some level of guilt or distress when the time comes to place a loved one in MC. However, the right place can be a huge benefit for them and us. When my DW was first diagnosed my goal was to "keep her as happy as possible for as long as possible." I believe I succeeded in doing that. But, as this horrible disease has progressed, I've had to change my goal to making sure she is well cared for. I can't say that she is "happy", but I do know she now feels secure, safe and is more at peace.
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If you haven’t already, it is definitely time to get financial and legal ducks in a row. Make sure you have legal and medical POA(Power of Attorney) for him and if he has those for you, it is time to remove him and choose someone else to hold your POA.
Do you have Long Term Care Insurance or will you be going private pay or Medicaid when it comes to funding his placement?
I would suggest an appointment with a CELA(Certified Elder Law Attorney) as soon as possible if you think you will need help navigating the Medicaid rules in your state as well as updating any POA paperwork you might have or need.
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Have you contacted the doctor to get some meds for the agitation and aggression? That may really be a game changer. When my DH started getting agitated, the doctor put him on zoloft and it has helped.
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So glad that I am not alone with the crying. My emotions are always on the edge. The array of emotions I feel are constant grief, anger, exasperation, fear and fatigue. Sometimes it is just overwhelming. You are not alone, my friend.
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Thank you very much. I knew that I had to get a lawyer involved but I didnt know which I should be looking for. Thank for this tip!!! The power of attorney was the first thing we did when he was diagnosed and definitely, I need to evaluate my options for financing the place.
Thanks again
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you can find CELA's listed by location at nelf.org
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Others have posted good advice, and I don’t feel qualified to advise. But I can share my experience, which may give you some comfort. I, too, had to face my inability to keep my DW safe at home. I moved her into a nursing home that does not segregate dementia sufferers from other residents. I was hit by crushing guilt, but knew it was the only way to keep her safe. Much to my surprise, over the first few weeks she developed a new circle of friends and began participating in the activities planned for residents. I had to admit that her quality of life was vastly higher than it had been when I was the sole caregiver. Now I regret waiting as long as I did. I hope you have the same experience.
One more thought about selecting a facility: I recommend hiring a consultant to take you on tours of facilities so you can see for yourself. Watch how the staff relate to residents. I chose the one where the staff treated the residents with respect, and were friendly with each other. It was a good choice. I used Care Patrol cost-free to help find the best place.
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Thank you for the advise and thank you for sharing your experience, it surely helps. Now that I am participating in more of these groups, I found lots of similar stories. It makes me feel more optimistic.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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