How did you find a therapist qualified to help a caregiver cope with partner's dementia?

Palmetto Peg

I have reached the point where I need help. I feel that I am falling apart. There is absolutely no time when I can just sit and be me - you know, have a cup of coffee and look at the paper, or take a little nap when I am tired, or even read a book. My DH was controlling before he got sick, and now it seems that he needs to own every part of my day. I am guessing that he is stage 4 - sometimes drifting into stage 5 for a bit and then rebounding. He asks for help with everything - even things I know he can still manage. I am angry, depressed, sad, crying, frustrated, etc. I know many of you are there. I would like to find a therapist who really knows what it is like to live with a PWD, and who could give me some coping tips, and maybe some ideas to encourage him to be a little more independent. I know we have a long time before he would be considered for placement as he still manages all of his ADL's and can even fool others for a while into thinking he is okay. Where should I look? Online therapy would be best because it is hard for me to get away for long. Any advice is greatly appreciated! Thank you all so much just for being here!

GothicGremlin

This is going to sound weird, but I started with Psychology Today ... I looked at what therapists were listed in my state and locally. The therapist I chose from that list had been a social worker prior to becoming a therapist, and she worked with Alzheimer's patients and their caregivers. So I chose her.

Since covid a lot of therapists (including mine) will let you do voice calls and video calls, so you don't need to leave home, although maybe your husband will have issues with that.

Caro_Lynne

Peg, I feel the same way. My LO is further along than yours; he needs assistance with everything, makes no sense, can never be left alone so I'm with him 24/7 and sometimes I just feel so overwhelmed! I had also thought about online therapist and did a google search and read up on some sites. Cannot recommend any since I did no research on any one in particular. However, since I take LO to his geriatric psychiatrist every month, I asked the psychiatrist during our last visit if he could counsel me during LO's sessions. He said he could, so I intend to start next month. Does your DH see a geri psyche?

The main purpose of taking LO to geri psych is for medication management; tweeking dosage, trying different meds, etc. He also asks LO memory questions (like year, president, date, etc.). He always gets those wrong. Anyways, I like him so decided to see him myself and also since I cannot leave LO anywhere nor do I have someone to watch him, it works for me. As far as speaking to the dr. in LO's presence, it does not bother me because as soon as we walk out the door LO has no memory of the visit.

I'm sure others will have suggestions to help you. I truly empathize with you. xo

M1

Peg: I am going to play devil's advocate and challenge you a little bit about your statement that he is not ready for placement. Many people in MC can still handle their own ADL's. If you need a break, you need a break, and perhaps you should think about that. There are no hard and fast rules about when placement is appropriate. That is likely not what you want to hear, but is probably more realistic than thinking that you can encourage him to be more independent.

trottingalong

My daughter suggested I look into the online therapist. She sees one currently and her insurance covers the majority of the cost. She showed me there are therapists that do work directly with caregivers of Alzheimer’s patients.

ghphotog

My life was everything you said. Not a single minute in the day when I could just relax and breathe. I tried a therapist for several weeks but then I couldn't get a free hour for it so I quit. I understand where you are at. Do you think he might go to daycare a one or two days a week?

Dogsaremylife

https://alzconnected.org/discussion/68368/how-did-you-find-a-therapist-qualified-to-help-a-caregiver-cope-with-partners-dementia

You are describing my life, except that my husband is at Stage 6.75. The thing that has saved me is that a retired military male nurse with our Hospice company got creative with my husband's meds. Of course this nurse was very careful to run each step of changes in meds by the Hospice doctors, and the result is that the incessant talking, agitation, walking around has been 95% stopped. I thought about whether it was right to "drug" my husband, but then I realized that he must be miserable during the agitation, so anything to help him regain peace was the best plan. He is on Seroquel, Trazadone and Haldol. He watches TV a lot (I make sure it's just comedies) or sometimes he says something rational. At night he is mostly calm and the best part is that he falls asleep hard around 3am and then sleeps like a rock until noon. This gives me time for housework, bookkeeping, a nap or just to relax a little. He wakes up refreshed. As to therapists, make sure you feel highly compatible with whomever you choose. It's a lot of money and you want results. Blessings!

housefinch

Agree completely with @M1

AnderK

I got my social worker through my Allina drs office. The therapist was always too busy. Our timeline tends to be if I can be home in the AM by 10, Tim is usually still in bed.

You might also look at groups that are online in your area that may meet your time requirements.

It is interesting to see what resonates in this group. I have found that my Tim can hold his own for about 2 hours and I feel folks walk out the door saying " he's okay". Happened with his sister when she sat with him for two hours. He asked about her kids yadiyadi. When I told her that he asks me about mine, her eyes widened. I have none.

You might call your city social services to see if they know of any support groups online. Also the Alzheimers Association may have something and you may be able to talk to a counselor on line there, or have one call you back.

Be safe.

Kathy

harshedbuzz

@Palmetto Peg

To answer your question, I find the best local resources come from local IRL support groups. For me, it was enough to have the support here and with the monthly meeting. Mom, as a spouse, needed more than that. I found her a psychiatrist (for medication) who found her a talk therapist. TBH, it wasn't an ideal fit and that practice, while large (4 psychiatrists, 10 clinical psychologists and even more therapists, counseling social workers and school psychologists) they didn't have anyone in the niche.

@GothicGremlin 's suggestion of Psychology Today is not weird. It's one of the better resources for local practitioners. Back when I was looking for care for my son, my health insurance's behavioral health administration company was laughably horrible (I was looking for help for an 8-year-old with ASD and anxiety and they gave me a list of marriage counselors and addiction specialists) so I avoid these now. Your family doctor or your DH's neurologist may know of someone. Dad was seen a teaching hospital's memory clinic that had counseling social workers for caregiver consults and who could make referrals to therapists familiar with the dynamics of dementia care.

I suspect you could be the poster child for the caregiver who doesn't recognize the amount of scaffolding their provide in a day. If you have to prompt ADLs, your husband is not independent in doing them. Full stop. It's a bit like a situation where a caregiver has their LO on a 2-hour toileting schedule and assists with wiping, flushing and washing who insists their LO isn't incontinent yet. If you didn't exist and there was no one to step in to do what you're doing, he'd absolutely need to be in MC at this point. My widowed childless aunt went to a MCF in the moderate stages when IADLs became a problem.

HB

Anna2022

As a retired therapist, I can tell you that looking thru Psychology Today or other aggregate online directories for therapists is a good place to start. You can filter for those who accept your insurance and then look for those who specialize in senior adults issues. If you read the therapist's information, you can probably find out whether he/she has real experience with caregiver/dementia issues. Then, you just have to call them, book an initial appointment (most therapists have a zoom option these days) and see if you think you could talk to them or if you like them.

Other sources to find a good therapist include contacting the ALZ association in your area, your dementia specialist/generalist who you are seeing for your LO, and your PCP. Again, you have to google/research a bit those names to see if you like them. Referrals can also come from other sources - my financial advisor recommended my current therapist (who has tons of experience with caregiving/dementias) - most CELA/probate lawyers and financial advisors often know good therapists (their clientele demands that they keep such information available and current). If you have any friends who have been touched by dementia in their families, they may have a name or two as well. You still have to do some research/google or call the therapist to determine if he/she actually has the experience you need. Don't be afraid to "interview" the therapist and remember, you can always stop seeing the therapist and if you decide to move on, it's OK/kind to say, "I don't think it's a fit" or "I've found a different therapist." Believe me, changing therapists is commonplace. But if you find a good one, keep attending sessions! I've found that weekly check-ins with my therapist have been a sanity-saver!

Good luck!

Palmetto Peg

Thank you all for your suggestions! I do know that I am providing a lot of scaffolding for him, and of course that is part of what is taking it's toll on me. I really do believe he isn't ready for MC yet, but it could be wishful thinking. I am going to check out the MC where we live (continuing care community) and just see what it is like. In the meantime, I guess I will start with my insurance and rethink online counseling. I can get out for an hour or so, and that would probably do me good, too.

He may be a little farther along than I think, too - because I am so involved in every minute of his day. Again, the suggestions are so helpful, and so is the shoulder to cry on. Thank you all!!!

Hope5757

@Palmetto Peg

M1 also told me to thoughtfully consider if my MIL really wasn’t ready for MC after I posted a comment very similar to yours.

When I sat down and objectively looked at my MIL’s abilities, actions and decisions, I realized my thought process was colored by my perception of MC being a place for patients who were not ambulatory. I was also not looking at MIL’s worst moments correctly. Like most PWD, she will have good days and bad days. As her bad days aren’t every day, I found I was analyzing her based upon my informal mental “average” rather than assessing her based upon her bad days.

For many different reasons, we still have her at home but at least I was able to look at the situation in a more accurate way.

Bill_2001

Hi Palmetto Peg,

Hang in there, as Stage 4 is, in my caregiving experience, the worst. As Ripley once said (believe it or not), I found Stages 5 and 6 easier to manage. The change in my wife going from Stage 3 to 4 was like falling from a cliff, and a real gut punch. She was still somewhat coherent, but the dementia was becoming so obvious (and terrible) that I felt like kicking and screaming the whole time.

As my wife progressed to Stage 5, she became less coherent, but much more cooperative. The stages are easier to gauge once they are in the past. She is solidly in Stage 6. It is a sad, heartbreaking journey to see the empty shell that once contained a brilliant, vibrant woman. But she is easier to care for because her instinct to take over disappeared after Stage 4.

Blessings, Bill_2001

Palmetto Peg

https://alzconnected.org/discussion/comment/200446#Comment_200446

Thanks, Bill. That does give me some hope. He is still aware enough to want to have everything he needs right now, but I am sure in later stages things won't feel so urgent to him. I guess I should be careful what I wish for - another stage just means more decline on his part, and that is sad. The advice was very helpful!

Phoenix1966

I can “hear” your exhaustion through the screen and very much remember being in that place.

Please ask yourself a few questions. If you were to become seriously ill suddenly, how will your DH manage? Do you have a Plan B if you run yourself down so badly that you might require hospitalization? And also really sit for a few moments and try to picture how your DH would manage throughout the day if you were not there. Does he get up on his own in the morning, brush his teeth, shave, pick out his own clothes that are weather/season appropriate and dress himself? Does he make breakfast for himself? Could he go to the store to get whatever food, medication, supplies he needs in the course of the day? Does he currently handle the bill paying? And the dozens of other “little” things we all manage throughout the day?

I really feel, like @M1 has already mentioned, that you should seriously consider placement in the near future if it is feasible for you.

M1

I wonder if we need an educational thread on people's perceptions of MC. The concept that one has to be nonambulatory or unable to perform any adl's is simply not correct. I do sense continuing placement stigma, and probably more from spouses than from children/siblings. But I think cost also plays into that. No one wants to spend this kind of money until all other options are exhausted.

psg712

https://alzconnected.org/discussion/comment/200839#Comment_200839

Totally agree on need for some education on MC. Although I care for my mother, not my spouse, I still sense some of that placement stigma. Also get the distinct impression from out-of-town family and friends that they think mom is in a sterile, multi-bed ward, eating pureed meals with nothing to do but stare at the walls! OK, maybe I'm exaggerating, but probably not much. They don't see the homey atmosphere, private room decorated with personal things, wholesome meals, dementia-informed staff and activities, nice (secured) outdoor garden area. It's not a luxury place nor a perfect team, but it fits her needs.

Jazzma

I was 'fortunate' in that my husband, at stage 5, had a health crisis that resulted in a nose-dive in his behavior and made it clear that placement was the only option. It was a clean break in what had been a slow, steady decline that might have gone on for another year or more. What I have found -- after the initial heartrending grief and devastation -- is the he is actually much happier and better off now. I thought keeping him home was the loving thing to do, and intended to care for him as long as I was physically able as a way of proving my love. In fact, he was trapped in the house with me 24/7 with the TV for company. We didn't go out because he was incontinent and mostly incoherent. In the care facility, he talks with everyone (whether he makes sense or not), participates in group activities, watches TV with his friends, eats well and helps with cleanup. I still break down often, grieving for the husband I knew, but I can't deny that this move was the best FOR HIM ... and will eventually be the best for me too. Of course cost is still the elephant in the room but we are fortunate to be able to afford two years. After that we will figure out a new course. I wish you all the best -- the exhaustion is likely much more crippling than you realize now.

Palmetto Peg

Thank you for all of your input. I am going to check with my local ALZ organization for suggestions regarding therapists. I am also going to call his Geri Psych and see about putting him on medication to help with the delusions. If none of these things help, I won't hesitate to start pursuing a placement for him. I will let all know how it goes. This forum is invaluable!!!!!